Talk to me, talk to me, now

'No matter what kind of disability a person in a wheelchair has, you have to talk to them loudly and clearly. You might not be able to immediately see what's wrong with them, but, hey, they are in a wheelchair, which probably means they are deaf and a bit slow in the thinking department'. At least this seems to be a common belief.

As soon as a stroke victim leaves the hospital it starts. People talk about, instead of to her or him. It actually starts earlier, but it can be excused if it's done in hospital because there the patient is often under the influence of drugs or, for some other reason, not thinking clearly.

Hospital. It was there, I remember, that I made my first attempt to communicate. My wife, Jen, was talking to me. I could hear her clearly. I could see her standing by my bed. What I couldn't do was talk to her. I couldn't hear my own voice. This was just one of many shocking revelations that were still to come. Then I remembered. I had had a Tracheotomy because I couldn't breathe. Now, with a hole in my wind pipe there was not enough air to let my vocal cords vibrate. I could see everything. Just not communicate. My voice didn't work, and both my arms were too weak to lift. It is a weird feeling, looking at someone you long to talk to, but you can't. It is like being locked in, imprisoned, but worse. The iron bars go through your body. You can't get out.

After a couple of days my voice still did not work, so my wife brought an A3 pad to the hospital. Just as well it was a big one, because otherwise I would have missed it each time I tried to write. Even though my left arm was strong enough by now to lift and write on the pad, I still managed to miss the pad occasionally. This was because I had double-vision. All this and, I suppose, the fact that I'm right handed made my first endeavour to communicate not exactly successful. My second try, however, was much better. Jen had a piece of cardboard with the alphabet printed on it. By 'saying' one letter at a time by pointing at the chart we communicated. A slow process, that reminded me of Charades. A process that required a lot of patience - on her part as well as on mine. But at least I made myself understood.

Finally I was able to communicate. Still, Jenny talked a lot to the doctors for me and about me. But that was alright, because in the ICU patients usually don't make their own decisions. Before that I had spent over a week in the CCU, and was certainly not in the position for decision-making.

After a week in Intensive Care I was moved to a single room. The noises I made had improved, and slowly, with the help of a speech therapist, I started talking. There was only one problem - people didn't understand me. Of course I thought I communicated just fine. But not so. After a while, I had to find out that people just pretended to understand me. It must have been as frustrating for them as it was for me. They were embarrassed or didn't want to upset me. No matter what I said, there always came the enlightening answer: "Oh, yes", normally accompanied by a well-meant smile. I could have been downright rude and would still have sparked the same intelligent response. People didn't, or at least found it difficult to understand me. Consequently my wife, Jenny, was to become more and more engaged in interpreting and deciphering whatever I attempted to communicate. People felt more comfortable talking to her instead of addressing me.

It was what I called 'The Communication Triangle'. A pretty rude way of communicating. A way of communicating that fits better into a mediaeval court, than into a modern, 20th century society. A way of communicating which most stroke victims, particularly the speech impaired, experience at some stage of their recovery.

When talking to a fellow stroke survivor about 'The Communication Triangle', she described the following scene which happened while shopping with her husband. The shopkeeper was very friendly and helpful. She explained every little detail. One could be forgiven for thinking this was a perfectly normal situation. It was. Except for one thing - the shopkeeper talked to her husband. No, it was not that her husband showed a particular interest in ladies underwear, nor did he have a distracted, 'kinky' look on his face, but his wife was sitting in a wheelchair.

Similar 'perfectly normal' situations like this happen every day somewhere in the world. Nobody in this triangle can be blamed. The outsider can't help feeling uncomfortable and making assumptions, the partner or care giver is only being polite by answering the person that is asking, and the stroke victim, ...well, who could blame the stroke victim for being sick of pointing out that nothing is wrong with her or his hearing?

After coming out of hospital, the stroke victim has to establish a new personality. Not that her or his personality is lost totally, it's just that outsiders think it is, and they show it without meaning to. Sadly, adults are not as uninhibited as children. While children unashamedly stare or ask if they don't understand something, or if something is wrong, adults try too hard to 'act normal', and, by doing so, show how uncomfortable they really are. Not only has the stroke victim to learn how the body reacts, but others also have to learn how they react to a crippled body.

Everyone who's ever seen one, recognises a person who has had a stroke. The sideways and often upwards bent hand, hanging lifeless at the end of an equally lifeless arm. The slow, careful, somewhat grotesque walk. The bizarre expression on the face, caused by muscles not doing what they used to do, but giving way to gravity. And when the person finally talks, you can't help but think that something is wrong with the brain, due to the slurred speech.

It is this slurred speech that often causes the biggest misunderstanding. That's why people generally feel more comfortable talking to the care giver. They don't take the time to listen and consequently, it seems like contents and delivery are being thoroughly mixed up. Like some history books which tell of messengers being killed because they delivered an unfavourable message, so are stroke victims cast aside as stupid, who can't talk, can't think. This seems to be the logical assumption.

All the irregularities a strokee encounters are caused by damaged nerves. The (physical) effects can be seen clearly. What we don't see is - the effect on intelligence, apart from the odd case that has to be 'put away', because they have a history of psychological malfunctions and are therefore no longer acceptable to society.

It never ceases to amaze me how able-bodied people treat disabled people. The wheelchair sets the tone and intelligence level of the conversation. Not only with people you know, but also complete strangers. It happens almost every time I'm out shopping, that some shop assistant tells me how good I look. A come-on? Probably not. I haven't figured out yet, whether they say that to make themselves feel better, or to make me feel better. Whatever. I must have looked pretty awful before my stroke because no one told me anything like that then.

Another common misconception is deafness. People in wheelchairs do have a tendency to look deaf. Not that there are any rules on how to recognise a deaf person, but a wheel chair, it seems, goes a long way to identifying 'deafness'. If an individual in a wheel chair encounters the privilege of being talked to by an able-bodied person, it is always with the volume of an amplified singing voice. Why? Nobody seems to know. Often the culprits themselves are not aware that they are insulting the wheelchair driver. That will only change if our society changes.