Yes, I guess I am. But I see colours and shapes and I can still hear some birds. I can’t  see to read and I mis-hear so much it is becoming embarrassing.

The issue is, however, that it is not about me. Deafblind is about millions of individuals , each with his or her own history, baggage, level of intelligence not to mention sight or hearing ability. Some are well loved and supported, some alone, embarrassed about their condition or even angry about their circumstances.

This book, autobioblography,  will hopefully help you understand what is going on for deafblind people most of whom can see and hear a bit.  It might also help you understand the pitfalls of categorising any community member because in the detail members may have little in common. On the other hand, of course, we do need to define the deafblind community so that society and each of us can understand and make provision for their very real needs.

Where to Start?

I came across a Facebook entry written by someone who was aware and anxious for a deafblind man and wanted to know more an be helpful to him.

‘Hi,

I’ve got a question and I hope you can help me. There is a man in my local area who I have seen walking with a cane, who frequently has some difficulty crossing our road (it’s fairly busy and there are lots of parked cars on both sides). He bumps into parked cars and other obstacles quite frequently, and when I’ve seen him I’ve generally kept an eye on him from a distance to make sure he’s not getting into danger. I have never seen him with a service animal. The other day I saw he was trying to cross the road but was having difficulty locating a space to do so, so I went over to offer help. He was unable to locate me by sight and when I touched his arm to indicate my presence he said “deaf” and he wasn’t able to orient himself to my location, either by sight or sound. I can only assume that he is completely (or near enough completely) without sight and hearing. At that point I wasn’t able to communicate further in order to offer help, and I wasn’t sure how to proceed, so I left him about his business and just kept an eye out to make sure he was safe.

I have been thinking about this incident a lot and have done a bit of research on deafblind communication, but it appears that there is no “standard” communications method, and many of the more common methods involve holding the person’s hand, which feels inappropriate and potentially frightening in the context of being approached by a stranger on the street, even with the best of intentions. I am also aware that unsolicited offers of help from able people, particularly strangers, can be unwanted and frustrating even without the communications barrier.

I’m feeling a bit ignorant and useless here. Do you have any suggestions on how I should proceed? I of course want to respect his independence, and fully understand that the best thing might just be to leave him be and continue keeping an eye out for his safety without interfering. But, equally, if I can find a way to communicate in a rudimentary way, and help him cross the road when he is struggling, then I would be more than happy to.’

At least three of us deafblind people responded on Facebook and, in my case, his observations have lingered in my mind and kindled a desire in me to write this book. So here is my response:

‘Hi,

First, a big thanks for looking out for someone like me. Keep doing that and, if everyone did the same, I and others would be safe and able to go out of my home and have a life, difficult as it is.

Second, very few people are completely without sight, hearing and some intelligence. So tap on my upper arm a couple of times and stay close. I may appear still or un-responding while I am weighing up the situation. I won’t see your face or hand movements but if you speak slowly and distinctly with just a few key words, we might make progress together and the chances are I will be damn glad of your help and friendship. ‘Help you’ would do for a start.

If I have had a bad day and appear grumpy or resentful, please just keep looking out for me and, when you meet the next deafblind person, start all over again and forget the bad experience with me. We deafblind people have all the usual upsets and problems in life as well as our deafblindness.‘