Jane Hubert Jane Hubert

A better future for the most vulnerable people

In Mind
Written by  Annelotte Huiskes Tuesday, 01 December 2009 09:51

Insight into the lives of people with severe intellectual disabilities and mental health problems.

Men and women who have severe or profound intellectual disabilities, and also have mental health problems and challenging behaviour, are among the most vulnerable in society. Many of these people have lived excluded lives in long-stay hospitals since they were children. Very little is known about their individual lives and experiences. For this reason social anthropologist Jane Hubert, of St. George’s, University of London personally followed a group of men and women who made the transition from closed wards into smaller units in the community. A study of many years that tells us poignant stories of lonely, secluded lives and teaches us valuable lessons for the future.

Jane Hubert’s thesis describes the lives of people who often cannot speak, can’t wash, bathe or dress themselves or go to the toilet on their own. Most of the people in the thesis also have challenging behaviour: they hurt themselves or others, break things, try to escape. These people lived in closed wards of institutions most of their lives, most from the age of 7 or 8. Most of them had nobody that still cared for them, no advocates, because nobody wants to be in contact with people who behave in this way. What made Jane Hubert go into these wards and confront these people on her own? “The original purpose of my study was to find out more about the lives and experiences of the men and women who would be moved from the closed wards into communities. But once I went into the institutions and saw the way these men and women lived, I learned that there was much more to these individuals than you would expect. The fact that they don’t speak doesn’t mean that they don’t communicate. Once I got to know them, I could begin to understand them by the way they reacted.”

Alone

Jane Hubert is a social anthropologist, which explains why she used ethnographic methods to conduct her research. “Visiting the wards was similar to visiting unknown cultures in far-away countries. You can’t talk to them at first, and everything seems strange, but you watch carefully, take part in their lives and gradually learn the language. That is what we did in the wards. We visited the men and women over a period of 3 years before they moved into the community, and then again after they moved out to see how they had experienced the move, and to see if their lives had drastically changed. Ten years later I went back again.” At first, the visits to the ward must have been frightening, weren’t they? “Yes, the first time I went into the ward and the self-locking door slammed behind me, I was terrified. The ward consisted of three huge bare rooms. Some of the twenty men ran round in circles or shouted. One man sat naked and roared loudly. Another banged his head repeatedly against the wall. And there was no member of staff in sight”.

 

Individuals

But gradually these emotions disappeared as Jane Hubert got to know the men and women in the long periods of day and night that she spent with them. “The more I got to know them, the more I was moved by their individuality, their desire to communicate and their physical and emotional suffering. I found out that all of the men desperately tried to communicate their feelings and needs, but that there was hardly any response to their attempts. These people were not regarded as interactive, social beings.” In her thesis, Jane Hubert gives two striking examples: ‘One man spent much of the time throwing himself with great force at the floor and at the wall. He was immensely strong, and roared loudly, appearing very threatening, and his face was usually bruised and bloody. Then suddenly his behaviour would change. He would stop throwing himself around and would sit down at my feet, take my hand to his head to stroke his hair, and say ‘Mummy’. When I told another man that I had visited his family, and explained how much his father cared about him, he took a loose strand of my hair and pressed it against first one of his eyelids and then the other. He did this a few times, and then he touched his eyelids again and smiled. I wondered whether talking about his father had conjured up some memory from childhood – perhaps of hair touching his face as he was kissed goodnight.’

 

Communities

Jane Hubert’s research also involved speaking with parents of men and women with these serious disabilities. “Unfortunately, the parents of many of the institutionalized people had gradually disappeared from their lives. Only a few would still come and visit their adult children. But I also spoke with parents who were determined to keep their disabled adult child at home as long as they could manage. They simply refused to send them to an institution because they saw what kind of life that would mean for their child. These parents had to struggle hard to provide the care their child needed.” But the situation in the institutions had changed, hadn’t it? “Yes, it was much better than it had been even ten years ago. The men that I studied went to different types of homes. Two groups went into communities with nice houses where they were given more freedom inside the house. They could eat what they wanted, and get up when they liked. One group went into a campus home, a unit on then old hospital site that still looked a bit like the old ward, but was also freer inside the house. But still, all of them were still locked in.” The women also went to homes in the community and to a campus home. How did they respond to the move? “At first, some of them were very confused and they wanted to go back. But gradually, they got used to the new places. Unfortunately, although the facilities are much better in the new homes, the men and women still have very little to do. There are few distractions, no occupation for them. The opportunity to radically change their lives was not taken.”

 

Lessons for the future

In Western society, the situation of people with this type of disabilities has already significantly improved, but there are still lessons to learn, says Jane Hubert. “We have got to change the whole ethos around these people and not only change their lives, but also change the way they are perceived by others. Make them socially visible and stop excluding them from society. They are individuals, just like you and me, with emotions, memories, hopes and fears. Treat them as such! Now we have the chance to make important changes, not only in Britain and Western Europe, but also in Eastern European countries, and elsewhere in the world where the situation is still very bad. We can and must use our international influence to improve the conditions in which these people live. We must also ensure that children today, who have the same complex disabilities, are not physically and socially excluded. Now we have a chance to move on. And not just talk, but practical solutions. We all have a role: to stop putting these people away in institutions and thereby making them socially invisible. They deserve a place in society, a sense of belonging. That’s why I am glad that we can actively participate from the Gouverneur Kremers Centre and the St. George’s Hospital in the project ‘Intellectual Disabilities’ of the World Health Organisation, where the knowledge acquired in research can actively be used for the cooperation between Eastern and Western Europe on behalf of these vulnerable people.”

Jane Hubert is a researcher at St. George’s, University of London (Prof. S. Hollins, former President of the Royal Society of Psychiatrists United Kingdom) and the Gouverneur Kremers Centre (Prof. Dr. L.M.G. Curfs, Director). This thesis is one of the outcomes of the ongoing collaboration between the Gouverneur Kremers Centre (UM) and St. George’s University of London (Prof. Dr. S. Hollins). Contact: Jane Hubert, email: This email address is being protected from spambots. You need JavaScript enabled to view it. , tel.: + 44 (0) 209 725 5504

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