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The Internet Was Made For Deaf-Blind People

Equipped with a screen reader and a braille display, the online revolution has been life changing for many deaf-blind people.

If I didn't know better, I would think that the internet was made for deaf-blind people. It wasn't. It was made for the military. But I can't think of anything else that, by itself, has had such a phenomenal impact upon our lives.

Those of us with no useful vision or hearing access the internet using a regular PC equipped with "screen reader" software and a braille display. Ten to fifteen years ago, before so much of day-to-day life was available online, deaf-blind people lived in a very different world.

Before Internet: We could not access television or radio, or go to the cinema of an evening. Correspondence was sent to us in print, which we couldn't read. The same went for newspapers, magazines and books. Unless, that was, charities got involved and transcribed information into a format we could read. Imagine finding out via a weekly braille news summary, produced by a charity, that for the past seven days you had been drinking contaminated water because you'd not seen or heard the reports that it was unfit for human consumption. This really happened.

We could not shop for ourselves, see products, read labels or communicate with the store's assistants. We had to struggle with this, or wait until somebody conversant in Deaf-blind Manual could accompany us to do our shopping. Imagine something as essential as buying food being so frustrating that one in four deaf-blind people went without food or medicine, according to a survey carried out by Sense and Deaf-blind UK in May 2000. That's what life was like for deaf-blind people before Tesco.com or Sainsbury's Online came to our rescue.

Our only way of communicating at distance was via text phone, and we needed expensive braille equipment to use it. Even then, we were only able to phone the small number of people who had the same equipment at the other end.

Radio, television, written information, distance communication, shopping--all were inaccessible to us. Now, in 2007, we can do all sorts of things and carry out a huge variety of daily tasks using the internet. I, for one, don't know how I could survive without it.

Post Internet: I'm not addicted to the net, but I do go online even before I set off for work. I quickly read the news headlines and my personal emails, leaving a more thorough look at both for when I get home in the evening. Before catching the train, I check for reported problems affecting my route. So, thanks to the joys of the internet, breaking news is right there at my fingertips from the moment I wake up.

The hour and a half it takes me to commute to the office is more than enough time offline. The first thing I do when reaching my desk is to go through my work-related emails. Plus, I often need to send my local authority's highways department a message to report the latest broken pedestrian crossing that I discovered on my way into work--they must be sick of me by now.

I work as the Campaigns Involvement Officer for Sense, the organization for deaf-blind children and adults. My role involves training, supporting and advising deaf-blind people and their families on campaigning, so email is my main way of communicating with service users and colleagues. Even so, people are sometimes surprised when they have exchanged emails with me only to later discover that I am deaf-blind myself. They're taken aback that somebody with my impairment can read and write fluently and do the job I do. It's thanks to email rather than face-to-face interaction that we can work together on an equal footing.

That's not to say face-to-face discussion is out of the question. I communicate with some colleagues using Deaf-blind Manual, a form of tactile finger spelling. Each letter of the alphabet has a unique sign, which is made against my hand. But with many colleagues, even those sitting in the same room, I use email rather than Deaf-blind Manual to communicate with them because it's faster, less time-consuming, and they don't have to get up to come over and take my hand to fingerspell what they want to say.

When asked for advice on an issue I know little about, I search the World Wide Web to piece together the answers. It gives me access to a wealth of information, the likes of which I could only have dreamt of before, and lets me hide my ignorance and stupidity into the bargain!

I probably couldn't do my job if I wasn't online. So maybe it was the DWP {Department for Works and Pensions} that originally masterminded the internet just to get deaf-blind people into work?

Without the net, I would have found my PhD extremely difficult, if not impossible. My research was exploring how blind and partially sighted people become independent travellers, which meant that I had to find out their views. I struggled for months with the problem that I am deaf-blind and communicate using Deaf-blind Manual, while my research participants are hearing and do not. Email interviews and online forums gave me a way to talk to them, and the vast majority of my data came from those sources. Plus, more and more academic journals are available online. How would I have accessed good quality research literature without them?

Another thing I get sick of all too easily is going to the shops. But I love online shopping. Groceries, clothing, presents, household bits and bobs, gadgets--you name it, I get it online. I can browse products and, often, read information, such as cooking instructions, that I could not otherwise access. It's a month since I last had a communicator-guide--somebody trained in guiding and communicating with deaf-blind people and whose role is to support us to carry out everyday tasks--and I don't know when I'll next see one. If it wasn't for online shopping, I would starve.

The net has also saved me from losing contact with my family and many friends. I would only have been able to communicate with them through braille letters sent by post or if they were in the same room as me and using Deaf-blind Manual. Email enables us to stay in touch.

I have also made many new friends online, especially deaf-blind ones. There aren't many deaf-blind people--only around 23,000 in the UK--and we're very spread out geographically so it's hard to get together. Going online, however, we can meet up from the comfort of our own homes. I'm in regular email contact with several deaf-blind individuals, and participate in online discussion forums, such as the Public Deaf-blind Discussion Mailing List (part of this list provided by The Teaching Research Institute of Western Oregon University, on which you can find a number of deaf-blindness groups). UsherLife, a site for people who have Usher Syndrome, also have an email discussion group.

Online groups do more than just enabling deaf-blind people to share experiences, ideas, and information and to have fun. Offline, tactile communication only really works for one-to-one conversations. For deaf-blind people who rely on tactile communication, the only way we can effectively join in with group discussions is by doing so on the web.

My life is centred around the internet. My work, studies, socializing and well-being depend upon it. All I need now is easy-to-use mobile web access and affordable braille equipment for it. Then I could be connected from the moment I get up to the moment I go to bed. How sad is that...?

Reprinted from BBC Ouch!, United Kingdom, October 17, 2007: {http://www.bbc.co.uk/ouch/}

Comments

I've always used my computer. Can't imagine life without it. I am deaf now made so recently (about 6 months ago) due to the powerful antibiotics they had to give me for Septicaemia as I was very near death. Before this I had Meniere's Disease anyway, but my hearing was problematic but not anywhere near it is now. I just wondered if there was a group who supported each other so I could maybe join and get some tips on living in a "silent" world.
Thanks,
Suzanne

ZZ - Disregard this link; it is used to trick spammers.