Governments and corporates communicate with their subjects through the sub-language of tick-box forms. These are highly structured and so convenient for administrators. But they are a woefully ineffective means of communicating the individual's needs and circumstances. [PDF]
My wife has suffered from mental illness for over 30 years. She is highly intelligent. She can think and reason to incisive depths. She is a good artist. She can write well. She is strong. She is certainly not mentally deficient. Nevertheless, she finds it very difficult to master procedures which she has not thought out and developed herself. She also has to have depot injections of drugs to counteract the chemical imbalance which causes her condition. The main side effect of these drugs is to make her much slower at doing things that would be considered normal. She also needs plenty of sleep. She cannot hold a job.
Most people have never experienced my wife's illness. They have neither suffered from it directly nor experienced living with somebody who suffers from it. Most people have no personal frame of reference against which to interpret and understand what life must be like for a family containing a member who suffers from such an illness. This includes the medical professionals who treat it. They understand well the chemical imbalances and the individual behaviour which results. Nevertheless, they have no experience, and little understanding, of the impact and the ramifications it has on the life and function of their patient and her family.
Doctors and nurses go home after each shift. They have time off. The patient and her family have the problems 24 hours a day. The illness has no sympathy for the fact that I may have an important meeting in Brussels the next afternoon. Disruption can strike at any time. I had to compete in a professional free market or business environment with a handicap which others did not have. It was, and has remained, a substantial barrier to the success of my career and my business. I think that society should be morally bound to help people in our situation. Notwithstanding, for over 30 years, no financial help has been forthcoming. Society has refused even to recognise that a need exists.
The problem has been one of communication. We have been unable to communicate our family circumstances and needs to those who have the means to provide. This I am convinced is because of the deliberately constrictive nature of the only channel through which we are forced to express them. Namely, DSS benefit application forms.
Apart from dire warnings of the consequences of giving false answers, the content of these forms is essentially pages and pages of over-simplistic questions to which the applicant is given the option to answer either Yes or No. Any written qualification to answers appearing outside the tick boxes is ignored. This is undoubtedly because the forms, upon receipt by the DSS, have their entire content keyed into a database which can only accept the Yes/No answers and has no provision for accepting input in plain English.
Typical of the questions asked are the eight which follow. As can be seen, these pertain entirely to somebody with a physical disability or perhaps mental deficiency. They have no relevance to people with the kind of illness my wife has.
|Can you go to the toilet on your own?|
|Can you wash and dress yourself in the morning?|
|Are you able to move about your home unaided?|
|Can you prepare a meal for yourself and your family?|
|Can you do the washing for yourself and your family?|
|Can you do the shopping for yourself and your family?|
|Are you able to use a vacuum cleaner to clean your house?|
|Are you able to get about outside your home unaided?|
My wife and our family need, and are deserving of, help. However, I am quite sure that anybody who does not have first hand experience of what my wife suffers from would conclude from the unanimous 'Yes' answers to the above that she is in no need of help. The reason for this is twofold:
They have no mental frame of reference against which to understand the illness and its effects on patient's family. This point has been mentioned already.
They assume their own circumstances as the context within which the answers should be understood. This point is new.
Illustrating the second point is simple. My wife correctly and honestly answered that 'Yes' she could do each of the things asked about in the questions. However, from this, people in general (including the officials who process the forms and assess patients' needs) naturally assume without question something which her answers did not actually convey. They assume concurrency. That is, they assume that the question she is really answering is:
"Can you go to the toilet on your own AND wash and dress yourself in the morning AND move about your home unaided AND prepare a meal for yourself and your family AND do the washing for yourself and your family AND do the shopping for yourself and your family AND use a vacuum cleaner to clean your house AND get about outside your home unaided - all at the speed people normally do these things, or at least fast enough to meet the reasonable needs of day-to-day family life?"
To which the answer is a resounding
Sadly for us, and probably also for many thousands if not millions of other needy people, the set of questions posed on the application form is inherently incapable of conveying the message contained in the answer to the compound question above. Through it, my wife is denied the means of informing the relevant officials of her true needs and circumstances.
One is in need of help. By answering each question on the form honestly, one is in effect saying that one does not need help. Therefore one could reasonably say that by answering the individual questions truthfully, one is in fact telling a lie. On the other hand, if one answers the individual questions dishonestly, one can thereby convey the truth. This appears to be a paradox.
But there is no paradox as soon as one realises that the form is not written in English, but in a constrictive sub-language defined by the tick-box questions. This is an entire language which comprises only eight independent statements. Each of these can be either 'True' or 'False'. Together, therefore, these statements can describe a universe which can embrace no more than 256 possibilities. Its state can at any time be recorded completely within a single byte of computer memory. That is the amount of memory needed to hold one typographical character such as the full stop (or period) at the end of this sentence.
But the universe in which my wife and family live is somewhat more complex than that one. Even the small aspect of our world which relates to her illness contains a degree of complexity and interdependence which is far beyond the wit of the form's sub-language to embrace. The truth cannot be conveyed through the medium of the form. Therefore the only conclusion must be is that ...
|The true answer to every question is|
Of course, there are considerably more than 8 questions on a benefit application form. Nevertheless, questions are not components of a grammar like words are. They cannot be deployed in combination to formulate an almost infinite number of statements. They are independent statements. No matter how many pages of questions are included in a tick-box form, its capacity for expression - its bandwidth - is negligible compared with that of plain English.
If only governments and corporates would credit us lowly individuals with the capacity for expressing ourselves in plain English, then the truth could be known. But perhaps it is not in their interests for the truth to be known.
Last year (1998) my wife finally met somebody who had studied this matter and had received some kind of official training on how to "answer" the "questions" on such forms. As a result she started to receive the minimum rate of what is currently known as Disability Living Allowance. This has lifted our income above that critical threshold of tolerability for the very first time. But at a time when my wife has never been better, it is a hollow reward for the 30 years when our need was so much greater. Besides, it could easily be taken away again when my wife's application is reviewed next year.