Articles

Why do we have to pay attention to intellectual disabilities in 2008?

The reality is that people living with intellectual disabilities continue to be unwelcome in, or excluded by, many countries around the world—in some they are even denied the right to life itself. Jean Vanier belives that they are among the most oppressed people in the world.

In addition, developments in medical science and other kinds of technological breakthroughs—in the context of the race for socio-economic profitability—have fuelled the growing support, seen in many countries, for the systematic detection and elimination, before or just after birth, of people who carry genes linked to intellectual disabilities.

This is more than a question of the presence or absence of some kind of disability. It is an issue of the overarching values of a society centred on performance, on “success,” and on the quest for profit. The growing intolerance of weakness, vulnerability, and what is seen as the cost-benefit deficit of some living beings, has made us forget that the primary characteristic of the human being, that which in fact renders us “human,” is sensitivity of consciousness and vulnerability of heart. Without them, we are incapable of showing any kind of compassion!

This initiative is not just about the cause of intellectual disability – it also is intended to be a collective, Internet vigil and reflection on the cause of preserving this essential character of our very humanity, a part that we must continue to nurture even in the face of the innumerable planetary challenges unfolding in our time.

Jean Vanier – re 1001 Drawings

When I met Raphael and Philippe, with whom I started L'Arche almost 50 years ago, they were living in an institution, cut off completely from the outside world, without meaningful work and without hope.

Happily, our industrialized societies have changed significantly since then. Institutions such as these have been closed and, as a result of the recognition and enforcement of the rights of people living with intellectual disabilities, new paths have opened for them. But, for all that, have we really opened our hearts? Have we really changed our view of the Raphaels and Philippes of this world, or our view of intellectual disability?

I am drawn by the “1001 Drawings” initiative. The activity proposed is disarmingly simple, and it reminds me of the lack of pretension I see daily among the people of L’Arche. But at the same time, this activity is a kind of “foot-washing.” Some might be shocked by it; others embarrassed. Nevertheless, it is an act that moves one along the difficult path from the head to the heart. In tracing, from an ordinary photograph, the facial features of someone affected by an intellectual disability, we must take time to really look at the person. In posting the drawings on the Internet, we are using its virtual space in a unique and original way, virtually “posting” acts of tenderness.

Last year, in the aftermath of the bloody events that tore Kenya apart, I visited the community of St. Martin, a village where 2,000 people living with intellectual disabilities were gathered and supported. It was—and they were —a ray of sunshine and love in the midst of a country where the threat of genocide was very real. It was also living proof that another kind of world is possible: a world of generosity and of mutual caring and assistance, which recognizes that all people—whoever they are and whatever their capacities – belong there.

Today, men, women, and children affected by intellectual disabilities are among the most oppressed people in the world. In totalitarian regimes, in war-torn countries, and in places devastated by natural disasters, the Raphaels and Philippes are always the first victims. But they are also the first ones to call us to acts of tenderness, and so I invite you to participate in “1001 Drawings.”

Jean Vanier

September 12, 2008

Intellectual disabilities deprive people of some aspect or aspects of their intellectual faculties. In principle, if you were to lose one part of your intelligence today, you would still have the same qualities and the same faults. If you are a patient individual, you would still be patient. If you are affectionate, you would remain so. Only your abilities would be diminished.
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Just as intelligence varies among individuals, so too does intellectual disability. It might be mild, moderate, or profound, and it is defined in comparison to, or in contrast with, intelligence. Just as the concept of intelligence has evolved over the centuries, and in relation to the state of science and the realities of different cultures, so too the concept of intellectual disability has been clothed in different garments through the ages, with different names and different social implications. The lack of understanding of intellectual disability is often linked to a limited or restrictive understanding of the reality of human beings. If a myth distorts our view of intellectual disabilities, that myth is no doubt linked to a restrictive concept of the human being.

Technology, Knowledge and Intellectual Disability

In the history of Western civilization, the increasing significance placed on the intellectual component of human beings and on their education has come at the expense of our emotional and spiritual dimensions. In a society in which technology and knowledge are of primary importance, human intelligence is measured in relation to intellectual achievements that enable someone to perceive, analyse, organize, and use all the data stimulating the senses in order to interact with the environment, to adapt to it or, if need be, to modify it.

If you were to lose one part of your intelligence today, you would, as a rule, be more disadvantaged in our technological society than you would have been in an agrarian society, whose daily activities are less complex and better integrated in the community. Your life would thus be easier, unless … the majority of those around you did not wish to share their daily life with you because you are different. Or unless you began to devalue yourself because you aren’t like everyone else. In that case, your faults might become more visible than your qualities, because you would be too sad and wounded to believe in your own value.

The Restrictive Scientific Approach
to Intellectual Disability

Today, people are identified as having intellectual disabilities if their abilities to adjust or adapt –skills people need in order to function in society – are limited (at least two of ten recognized adaptive skills must be affected), and if their measurable intellectual “score,” according to identified standards (IQ), is less than 70 or is two standard deviations below the median score of the comparison group.

This “measurable” approach to intellectual disability is nevertheless not an exact science. It can be dangerous if it is used to identify a school-aged child as having an intellectual disability, on the basis of an academic failure. It is not difficult to see how the concept of intellectual disability is linked in this way to the culture of an age, and to its values. School plays therefore an ambivalent role, offering the hope of social advancement or progress, while at the same time justifying, by virtue of an implicit ideology of intelligence, the failures seen. People who are intellectually limited must therefore carry the double burden – of their failure and of the feeling of being excluded.

The fuzziness – the lack of precision – in the concept of intellectual disability, in particular its mild forms, may also be harmful to pedagogical practices that seek to support people who are at an intellectual disadvantage. In only measuring verbal and logical intelligence, the results obtained distort our view both of human intelligence and of intellectual disability.

More Expansive Approaches

In 1964, when Jean Vanier founded the first L’Arche community in the French village of Trosly-Breuil, he became one of the pioneers of the de-institutionalization movement. His first goal was to offer people previously condemned to institutions a place to live that would be friendlier, more like living with a family. He quickly made an important discovery that began to change his view of intellectual disabilities. He saw that, in the context of community life, people living with intellectual disabilities displayed extraordinary qualities that enabled people from different cultures, traditions, and educational backgrounds to live together.

Their acute sense of interpersonal relations, the depth and sincerity of their empathy, their resilience and creativity, their predisposition to forgive and reconcile, their faithfulness and openness to others, and their capacity to accept those who are different, as well as their innate capacity for celebration, all bear witness to what Vanier calls “the intelligence of the heart.”

During the same period, researchers, including Bengt Nirjie in Scandinavia and Wolf Wolfsenberger in the United States, were promoting the concept of “normalization,” a concept that enabled a shift from the medical model of intellectual disability and opened a way forward that would ideally see people living with intellectual disabilities participating fully in the life of the larger community.

Without necessarily giving scientific status to Jean Vanier’s concept of “the intelligence of the heart,” the work of Howard Gardner, Harvard Professor of Cognitive Psychology, in positing that eight types of intelligence co-exist in every human being, has helped bring about a new view of intelligence. This theory of “multiple intelligences” has already exerted an important influence on pedagogy and on the approach of the education system to intellectual disabilities.