Read this article published by Le Cercle Psy.

A former rehabilitation doctor, Elisabeth Zucman has devoted fifty years of her professional life to people with multiple disabilities. Her goal? To defend and ensure recognition of the rights of these people for whom « there’s nothing to be done », as we used to say. What is the origin of this fight? What’s so special about his approach to human beings and patients? What are the « risks of the job »? And how has this experience shaped her personal life? Meet a pioneering woman of inexhaustible altruism, whose life was divided between victories and disappointments.

How did you come to work with people with multiple disabilities?

My desire to work with people with multiple disabilities was born out of a sense of injustice. This professional orientation became apparent as early as my medical training. From then on, I chose to specialize in re-education and functional rehabilitation, a field that was still in its infancy at the time. Then, I was surprised to learn that, in the United States, children called « cerebral palsy » (commonly referred to as Infirmes Moteurs Cérébraux, IMC) were cared for, and not encephalopathic children (whose IMC diagnosis is coupled with mental retardation). This injustice revolted me: how could we leave children and their families suffering and without care? They were clearly outcasts among the outcasts. So I decided to devote myself to these children for whom « there was nothing to be done », to these children for whom few professionals cared at the time, and whose care was not reimbursed.

How did the situation finally unblock itself?

By « chance ». A high-ranking member of the Assistance Publique de Paris was personally touched by the cause of these children, her granddaughter having just been diagnosed with encephalopathy. This was in 1964. From that day on, Assistance Publique de Paris opened its doors to us, and an association for the benefit of these children was founded: CESAP (Comité d’Etudes et de Soins aux Enfants Arriérés Profonds). The creation of this association enabled me to first of all plead the cause of these children to the French Social Security Department. My aim? That these children should, of course, also have access to healthcare. The words I spoke to them that day still echo in my mind: « It’s been twenty years since the Nazis left. We can no longer show sub-humanity to anyone. A few days later, all the Caisses stopped refusing care to so-called encephalopathic children! This event, which I always take pleasure in recalling, is the foundation of my life as a professional… and as a citizen.

Your rich professional background has enabled you to approach and experiment with different methods of caring for encephalopathic children. Among them, the famous Doman or patterning method. What did it involve?

I was introduced to the Doman method by Glenn Doman himself, during a one-year stay in Philadelphia. This method, which was taught directly to families, consisted in stimulating the child’s whole body in a harmonious way for fifteen minutes, three times a day. At the time, I was literally seduced by this process, which I found gentle, reasonable and full of common sense. Within a year, I observed magnificent progress in the children, which I directly attributed to this method… Wrong! In the end, the progress observed was not the result of its relevance, but of the fact that these children were recovering from neurosurgery, and that their environment was favorable to them. In any case, the method I was able to experiment with at the time is very different from today’s Doman method, which over-stimulates children and invades family life for eight to ten hours a day.

Of all the methods you’ve been made aware of throughout your career, which do you favor in your practice?

I’ve always refused to apply just one method of care. That’s far too simplistic! Instead, I used a variety of methods, with flexibility and individualization, on a case-by-case basis. Because one thing is certain: no two children with multiple disabilities are alike.

In your book, you mention a brief but rich experience working with sick and injured children in the heart of Nicaraguan society. What struck you most during this experience?

Indeed, in 1984, Secours Populaire Français asked me to go to Nicaragua to assess the aid already in place. What struck me most was the great dedication and solidarity that prevailed between the local people and the disabled children and adults, in a country scarred by civil war and poverty. Unlike us, the villagers spontaneously modified their physical environment to integrate disabled people as much as possible (for example, they didn’t hesitate to build an inclined plane at the school, or in front of their house, to facilitate wheelchair movements). What’s more, families proved to be participative: they spent a lot of their time at the hospital, at their children’s bedside, changing them, feeding them… There wasn’t the usual disconnect between the nursing staff and the families. This experience reinforced my decision to include families in my care. So it was all this goodwill, non-segregation and extreme solidarity that struck me most, and delighted me.

In your book, you state that you are « a doctor who pays more attention to the person than to the disability »…

It’s the word of an outraged doctor! In medical culture, we are trained to focus more on the disease than on the patient. Similarly, in the medical-social field, doctors often focus more on diagnosis and rehabilitation and treatment techniques, than on the patient himself. For me, and for all those who work with disabled people, we’re concerned with the whole person. My priority? To enable the child to build a continuous sense of existence, despite his multiple disabilities. To achieve this, we need to let them live, breathe, communicate and develop a social life. Focusing solely on the disability is very simplistic, and that revolted me.

Were the obstacles you encountered along the way mainly human or material?

These obstacles remained essentially human. I came up against the famous « there’s nothing we can do » attitude that prevailed among carers! In medical training, there’s nothing to make us aware of the psychological, physical or social differences between individuals. In this sense, there remains a cultural resistance on the part of the medical profession towards those who carry a difference. The difficulty these patients have in communicating makes it hard for doctors to understand the location and origin of their psychic or somatic pain. Over the past ten years, Assistance Publique de Paris has been putting in place measures to overcome these difficulties: a communication kit, a pain assessment grid, a liaison sheet, etc. This has led to a great deal of progress! A lot of progress has been made! However, if these tools are really relevant, it is certain that they are still insufficiently used.

In your book, you address a sensitive point in the profession: the « risks » of the job. What are these risks?

The main risk in this profession is the mistreatment of people with multiple disabilities by caregivers. This is a direct consequence of another risk: the risk of exhaustion. Yes, working, living and helping disabled people on a daily basis literally exhausts our psychological resources. It’s a fact of life. Whether we are aware of it or not, we are in a constant state of empathy. Each of us is the bearer of an ideal, of a desire to cancel out disability, and to value all the small improvements that our daily work brings to the person. So we’re frustrated that we can’t make a bigger difference for them. But this psychological investment leads to great fatigue on the part of professionals, a kind of burnout that is neither depression nor demotivation. I make no secret of the fact that I myself have been exhausted on several occasions. We all have to be our own guardians, in terms of vigilance. Abuse can be one of the results of this great fatigue. The best form of prevention is to raise awareness of the risks involved. For example, we need to be aware that certain factors, such as repetition and routine, increase the risks. For this reason, we must not hesitate to introduce changes on a daily basis: of schedule, of group, of installation… The objective? To restore meaning and value to each of our daily actions, and thus prevent the risk of abuse by preventing exhaustion.

Has your experience working with people with multiple disabilities enabled you to deal with suffering more calmly?

Yes, that’s for sure! Generally speaking, my profession has made me sensitive to psychological and physical pain. Above all, this long experience has enabled me to deal with my own ageing and placidly accept the limits of my own body. Today, I’m 81 years old, and although my head is still going strong, my body is gradually getting sore. I approach my own situation in the same way as I used to approach that of people with multiple disabilities, i.e. I’m more interested in what still works than in what no longer works. This experience of suffering has also made me an indulgent mother: I’ve always been in the habit of taking my children’s difficulties in my stride. I used to focus mainly on what they did well, and tell them so.

If you could make even the most impossible wish come true, what would it be?

My dearest wish would be to see an increase in the density and quality of human resources working with vulnerable people! At present, in many sectors, we are wrongly compressing human resources for economic reasons. Profitability is so disastrous! Today, I believe it is more than necessary to assess the invisible cost of this so-called economy. Rather than restricting human resources, this approach would make it possible to chase down the waste of inorganization and disempowerment.

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Élisabeth Zucman. Auprès de la personne handicapée: une éthique de la liberté partagée. Éditions Erès, 2011.