SOCIETY TODAY

Outside Society

An outing with Vince

Andrew Bradford

Some years ago I worked as a medical orderly in a home for the handicapped in Liverpool. The residents were all long-stay patients, suffering from a variety of disabling diseases, and most of them were very badly handicapped indeed. The home itself I would describe as being generally well-run, and I would say that the management and staff tried to ensure that their patients led as fulfilled lives as their disabilities and their social situation permitted.

Vince was one of the home's residents. Of Irish descent, he was in his late forties, and had been a resident of the home for some two years. He had by then just another eighteen months to live, his life being foreshortened by an hereditary disease, Huntingdon's chorea. Chorea is a paralysis of the central nervous system, which progressively attacks the victim's limbs, leaving him unable to make any useful movement whatsoever, and almost unable to . communicate with his fellows, not only robbing him of speech, but paralysing the racial muscles, rendering the victim expressionless. As well as this, the ability to chew and swallow food is impaired, as the nerves of the jaw and throat are affected.

Vince had entered the home as his disability increased and his home circumstances became increasingly intolerable. For many years he had been a regular serviceman in the navy, and his wife had died of cancer some six years previously. His two sons had left home to go to university, and by the time Vince's condition had deteriorated so far that he was unable to look after himself, other relatives were already caring for another brother and a sister, both also suffering from chorea.

1 Mealtime, for Vince, could be a distressing experience. He was unable to feed himself, and had to be fed by a helper, a duty which I often performed. Food had to be cut up into tiny portions and fed to him on a spoon. He had great difficulty in swallowing, and frequently he started to choke on even the smallest morsel of meat or potato. There was little to do When this happened, except to give him a sharp slap across the back to try and relieve the congestion. This usually resulted in morsels of half-chewed food, often actompanied by a set of dentures, being sent flying across the dining table. Not surprisingly, Vince, who although terribly physically handicapped, was a normally intelligent man, was highly frustrated and embarrassed by the indignity of mealtimes, and his frustration seemed only to make the physical processes of chewing and swallowing more difficult.

One day in my first week of duty at the home, I was detailed, along with three other members of the staff, to accompany a party of ten residents, including Vince, on a trip in the home's ambulance. We were paying a visit to another home, run by the same charitable foundation, in North Wales, where we were to be entertained for lunch. Neither Vince nor I had been there before.

We were forced to start work early that morning, as at each end of the journey there was about half an hour's work involved in assisting the disabled residents into and out of the ambulance. Shortly after seven, I went into Vince's room to get him out of bed, take him to the lavatory, wash, shave and dress him for the journey. Normally, Vince dressed in very old, shabby clothes, to potter about the home in. He did not lack new or tidy clothes, but, once again, his disability caused clothing to deteriorate quickly. He was unable to control a steady flow of saliva which trickled from his lips down his chin and onto shirts, pullovers, jackets and trousers.

However, today was a special day, the first time that Vince had left the grounds of the home in several weeks; a day, he had managed to tell me the day before, that he was looking forward to. I searched in his wardrobe and found a smart, quite new-looking three-piece suit, one which must have been made to measure, a clean shirt and tie, and washed and dressed him. As I pushed him to the breakfast room he saw himself in the mirror; he looked pleased with what he saw.

I thought how, in the days when he had had full use of his physical capabilities, he must have been a very handsome man, and one who took great care and pride in his dress. Something of that pride seemed to have returned to him that morning. Normally, as he shuffled around the home in those awful, dirty, stained sweaters, he looked morose, unkempt and sat in his wheelchair almost bent double. Today he sat with his head held high, and a look of alertness and pride in his eyes, which I had never before seen in him.

The journey to North Wales took some two and a half hours. It was raining hard as we drove through the city, but by the time we had crossed the Mersey and were driving through the lush green Cheshire countryside the sun had begun to shine, and we saw a rainbow. This was the first rainbow I had seen for many months, I reflected, and it must have been an even rarer sight for the residents, few of whom were able to leave the home often.

On the journey, Vince still had his proud, erect bearing and seemed to be enjoying the ride, looking around him at the changing scenery. He was sitting next to Carol, a resident in her late thirties who had received severe brain damage in a motor accident some twenty years earlier. Like Vince, Carol had been robbed of speech and muscular co-ordination. After her accident she had been deserted by her husband and had lost contact with all her other relatives. Either as a result of her accident, or as a result of her social predicament, Carol had acquired some obsessive habits, which could sometimes irritate and sometimes amuse. One of these was a compulsion to tidy up everything and everybody in sight, irrespective of whether or not this was necessary. On the journey Carol occupied herself with tidying Vince, removing any stray cottons or specks of dust which dared to alight on Vince's suit, and taking his handkerchief and stemming the tide of saliva from his chin. Vince was not unhappy at this treatment.

When we reached the home it was raining hard, and we were forced to unload the residents from the ambulance and push them into the home at breakneck speed. This was accomplished smoothly, however, without anybody becoming seriously wet or disarrayed, and we joined our hosts in the lounge. Many of our home's residents had friends and acquaintances among_ the host home's residents, and very soon old friendships were renewed and new acquaintances introduced. Because of their speech difficulties, however, Vince and Carol tended to remain on the fringes of groups, rather than become active participants in the conversation.

Soon, the North .Wales staff began to serve lunch to their guests. It was a buffet lunch, sandwiches and savouries, tea and cakes. I found myself with the job of assisting Vince.

Either owing to the excitement of an all too rare day's outing, or to the general instability of his medical condition, today Vince's eating problem seemed especially acute. By the time he had eaten just a couple of sandwiches he had almost choked twice, and was covered from head to foot in morsels of half-chewed food and globules and trails of saliva.

The more he became aware of this, and the more he became aware of how his smart appearance of the morning was deteriorating, the more distressed and frustrated he became, And the more his problems increased. While his jaws were full of food he was unable to swallow, and he was trying to tell me something, which I was completely unable to understand. By now the clean white handkerchief which I had put into his pocket that morning was completely soaked through with saliva.

After the meal was over I took Vince to the lavatory. In the washroom I made the best effort I could to clean him up, but was not altogether successful, as both he and I were aware. Instead of the proud, alert, erect Vince who had left Liverpool that morning, he

was now morose, dejected ' ashamed. Suddenly, and appare ly without too much effort, he managed to utter a completely audible sentence. He simply said, "Take me home, please."

Needless to say, I was completely unable to help; there was only one ambulance, one driver, and the rest of the party were unwilling to leave so soon. I had to push Vince back into the lounge and leave him to face his hosts embarrassed and ashamed as he was. I found my colleagues on the Liverpool staff were about to join the North Wales matron on a tour of the home, and I joined them not without some relief, at no longer being confronted with Vince's embarrassment.

The tour •took some twenty minutes, and when it was over it was time for our party to prepare to depart, taking advantage of a break in the weather. We assisted the residents into the ambulance, said farewell, and began the return journey, with heavy rain and a very sombre and overcast sky for most of the journey.

Despite the unfavourable weather, most people seemed to have enjoyed the trip, and the conversation was witty and cheerful. Vince, however, still had not regained his pride and alertness.

Many of my thoughts on the return journey and later on in that evening were taken up by Vince's predicament. I was disappointed that Vince's day had been ruined, and annoyed because I felt that the whole thing could have been prevented.

Normally, at mealtimes, Vince wore an apron to protect his clothing, and we had simply forgotten to take it with us on the outing. Had we done so, of course, Vince could have made as much mesp as he chose to without damaging his appearance or his self-respect nearly as much.

1 was not looking to blame anybody for this act of forgetfulness — I could have blamed myself, or any other member of staff had I wanted to, but it was no individual's responsibility to remember such items. Obviously, 'when an outing took place, care was taken to ensure that essential drugs and medical supplies were taken aboard, but the occasional outing was by no means planned

as a military operation.

Despite my feeling of irritation, the concept of blame did not really seem relevant on this occasion. What I had witnessed, was, I felt, a rather sad example of social humiliation caused by severe physical disability destroying a man's self-respect. If it had not happened this time it would have happened on some other occasion; had probably happened before and would happen again.

It' did not matter to Vince that the people he travelled with to North Wales, his fellow residents and helpers, all knew and understood his difficulties, it did not matter that there were almost certainly others at the North Wales home with similar difficulties and it did not matter that nobody at the lunch showed the slightest sign of disgust or embarrassment. While he would not be so embarrassed at this difficulty when it took place at the home where he lived, that is to say in his home, it mattered as much to him that he felt he had made a spectacle of himself in another home for the handicapped, as if the in-, cident had taken place at thetord Mayor's Banquet. In short, he felt himself to be a social outcast.

Of course, this was not true. He was not an outcast on this occasion, but like all his fellow residents, who had been forced to take refuge in the home, he was, by the nature and extent of his handicap, cut off from society; unable for example to make the choice of leaving the home one day to renew old friendships or make new ones, relying on people outside the home to choose to seek his company. He was even cut off from choosing solitude, as were most of his fellows, for they could not choose to leave the home's drawing room to be alone; they had to call help even to do this.

Perhaps some of Vince's fellow residents were embarrassed or disgusted by his eating difficulties, certainly nobody showed such a reaction, but is this because the peculiar social situation of the home's residents breeds a certain tolerance? I feel it does, but I. also feel that this tolerance is wafer thin. Vince's fellow residents might tolerate his difficulties, not out of choice but because in the social situation which they are all in. such tolerance is essential.

I have witnessed breakdowns of tolerance in such homes, they are usually unpleasant and leave scars which do not heal easily. No matter what efforts the residents may make, and they are considerable, and no matter what efforts the staff may make, personality clashes and breakdowns of mutual acceptance take place, and the underlying stress which causes these clashes seems simply to be the fact that not one of the home's residents is where he or she is as a matter of choice.

Possibly a major cause of Vince's embarrassment and anxiety that day was also due to the knowledge or to the feeling that his fellows' tolerance of him was wafer thin, and no doubt this anxiety itself did not assist the medical condition that led to his early death.