deafblind-access.com

On the 27th November Graham made this presentation to a Sense organised Assistive Technology Training Day at Queen Alexandra College, Birmingham.

Good morning, having been a student at Queen Alexandra College a quarter of a century ago I feel honoured to be invited to speak here today. Through this presentation I will:

1.Give you some background about my deafblindness and how it affects communication and my access to information.

2.Describe some of the technology which has helped me to overcome access barriers and be more in touch with the world.

3.I will also be highlighting that: Because most devices are not designed for deafblind people they don't tend to meet all the needs they could be expected to, This means it is often necessary to use several devices to address all or most access needs and, That this greatly increases the already prohibitively high cost of meeting the access needs of deafblind people.

4.Finally I will be raising the issue of funding for deafblind access technology.

I was first registered blind aged 3 & found to be hard-of-hearing at the age of six. By the time I was 16 I was profoundly deaf and had to learn the deafblind manual hand alphabet so that people could continue to communicate with me. From this point onwards I could not use the telephone, listen to TV or radio or take part in group conversations. My only access to information was through Braille books and magazines.

It was not until 1984, after my formal education had ended, that I was first introduced to a braille computer. Since then I have used many braille computer systems which have opened up my access to email, wordprocessing, and more recently, to the internet. Access to computers made it possible for me to take up my first office based job with Sense in 1987. Since this time they have played a major part in enabling me to hold down a professional job for the last 20 years.

Access to the telephone via my PC, a modem and braille display using software written by a deafblind man called Steven Hazelhurst, has greatly enhanced my independence and social life. With the addition of Typetalk I have also been able to deal with many companies including my bank by phone. This is a bigger advantage for deafblind people who often cannot get out and about independently. You can contact Steven at steven@wintexware.com.

You will note from my description of the system used to access the telephone that it's an assortment of rather unportable devices cobbled together--its hardly something you can put in your pocket or unplug and plug in at your friends house! So my access to the phone is great at home but none existent everywhere else. Its a real limitation on deafblind people's access. This reflects the fact that there is very little technology out there which has actually been designed with deafblind people in mind. Most specialist technology is either developed for deaf people with sight or blind people with hearing. Most of the time blind people don't need textphones and deaf people don't need braille computers--little wonder we still don't have portable braille textphones. But its only a question of some software to make it possible--the hardware we need already exists.

Here I am referring to portable braille computer systems such as the braillenote which do not currently include software to enable them to be used as a braille textphone, or as a one to one communication device to enable a deafblind person to talk to another person. (Commonly known as the "face to face" mode). I'm hoping Alan Davis from Humanware may have an update on this for us.

While we are talking about the Braillenote I would like to say what a fantastic device this has been for me. One of it's most amazing features is its ability to connect wirelessly to the internet--both f or email and surfing.

This has enabled me to maintain my access at friends houses, on GNER Intercity trains and anywhere with an open network. There is also a facility for reading electronic books so my Braillenote also comes to bed with me--no light required!

In the same way that there is no one shoe which fits everyone it's also true that there is no one piece of technology to suit all deafblind people. Meeting the technology needs of deafblind people could not be more subjective. The levels of an individual's hearing & sight loss & existing communication and other skills need to be taken into account when researching suitable equipment for the individual. Options will include low vision access systems, speech systems and those which are tactile.

As I have said, there is very little on the market today designed for deafblind people. One interesting exception however is the Bellman Alert System made in Sweden. I was very interested, but not surprised, to learn that the parents of the inventor of this system are both deafblind.

As such the Bellman deserves special mention here. Unlike some other vibrating alert systems the receiver is small enough to fit in a pocket comfortably. For deafblind people however its defining feature is the inclusion of different patterns of vibration for the phone. For deafblind people however its defining feature is the inclusion of different patterns of vibration for the phone:

doorbell

and fire alarm.

I had waited for many years for this system--until it arrived my friends had to spend many long hours on my doorstep waiting in vain because I could not see the flashing doorbell or hear it's loud ring!

I would now like to introduce you to the deafblind experience. We won't worry about blindfolds or ear defenders. I just want to demonstrate the different patterns of the Bellman. Here we have the doorbell. And now the fire alarm. And this is the phone. You will see that its very easy to tell the difference--it is a very user friendly system. In addition to the standard system last year in response to my request the technician from Peterborough Social Services built an extra transmitter for the Bellman which sets off my pager so that I know when I have an incoming text message on my mobile.

An all in one system such as this is bliss because it avoids the need to carry both the pager and mobile around the home at the same time. When your deafblind its so easy to end up having to carry around lots of devices to meet different aspects of your disability--you soon end up with a new handicap and we're not talking horse racing here! Having to use many systems to meet many needs also brings many other problems, not least of all cost of purchase, cost of repair and the challenge of learning to use so many different systems. Often my shoulder bag is so heavy with the assortment of braille computers, mobile phones, mobile phone braille displays and all their separate battery chargers that I can barely stagger under the weight due to my balance problem!

Yes, you heard me correctly, I've also got a braille mobile phone system. This consists of a standard bluetooth mobile connected to this miniature braille display. Its a cool system from Humanware which is truly portable. It will even fit in my shirt pocket. Apart from text massaging I've also been able to use the alarm clock which of course vibrates. Again the only thing missing for deafblind people is the fact you can't use the phone for textphone calls. Could the RNID adapt their mobile textphone software to run on a braille system for deafblind people?

I now want to move on to another area of technology which has helped many deafblind people--the cochlear implant. I have one of these too! A man who has everything I hear you say! Cochlear implants are only suitable for people with profound nerve deafness in both ears. They are also fitted to many young deaf and deafblind children and even some babies. The results vary widely with some patients regaining the ability to understand speech and others becoming much more aware of environmental sounds. Cochlear implants are available on the NHS. We have leaflets here if you would like to find out more.

On a personal level my implant has been very successful in that I am now able to understand some spoken words such as "yes", "no" and "ok" even at a distance. I am also able to recognise and take advantage of hearing many environmental sounds.

Perhaps of particular interest to some here today is the fact that, with the implant I am now able to use the RNIB's audible spirit level! This is a real advantage for me as it means far greater independence when doing DIY. In this instance I am now able to take advantage of audio based technology which simply was not possible before I received the implant. How many other deafblind people could benefit in a similar way?

So far in this presentation we have looked at very specialist technology designed for disabled people. But is this the only answer? Should we also be looking for solutions on the open market and if so what are the advantages? Open market usually means lower cost, greater availability and therefore more easily obtained and repaired. For me one of the best examples has been my Moulinex food processor.

With this handy gadget gone are the risks of chopping your fingers off with a knife. Processing food suddenly becomes much easier and safer. This machine certainly opened up a whole new world of cooking for me.

I have tried here to touch upon some of the many pieces of technology which I as a deafblind person have used and benefited from over the last 23 years. Without this technology I would not be where I am now. The list of benefits are endless.

I now want to address the subject of "cost" and affordability. There is a wealth of specialist technology on the market, which while not designed for deafblind people can meet some of their needs. (Although you may need to use a few devices to meet those needs which will greatly put up the cost per deafblind person). The problem is always the high cost of such small market technology. Braille computers are still prohibitively expensive at around three or four thousand pounds each & therefore beyond the reach of most deafblind people. The only deafblind people who are likely to have access to such expensive technology are those in employment where it will usually be funded by Access to Work. But most deafblind people are not in employment--most therefore won't have this technology. Unlike in Sweden where the state pays for specialist technology for deafblind people outside of the workplace the UK government does not. Who then pays? The hard and unacceptable fact is that many deafblind people who need this technology don't get it because there is no funding. Charities try to raise funding for individual cases but are unable to meet the real level of need which exists. Training deafblind people to use these systems is also very costly.

I received a new windows PC in May but have still not had specialist access training in order to use this. Deafblind people will also require ongoing support, particularly since these systems form vital lifelines--in no way are they a luxury.

Clearly we need to campaign strongly for the UK Government to provide funding for specialist technology which will meet the comprehensive communication, information and mobility needs of deafblind people. This should be provided to every deafblind person as of right, rather than it depending on the assertiveness of the individual. Now you know how I got the gear and thus why i'm here.

Thank you