From a blinding concept to empowering partnerships

What is a disability?

Speech to the Seminar on the UN Convention on the Rights of persons with sisabilities, Eligibility Criteria and the international Classification of Functioning, Disability and Health 

19th | 20th April 2010 

Ministero della Salute 

Lungo Tevere Ripa 1  -  ROME 

Definition of what?

This debate on definition of disability is “in the air” from a long time; the General Assembly of the United Nations proclaimed 1981 as the International Year of Disabled Persons whose theme was “Full participation and equality”, recognised disability “as a relationship between an individual and his or her environment”, and it appear a bit amazing that thirteen years after we still focus on that issue and that we did not find the way out. We know that disability is a moving concept influenced by the cultural approaches as many other factors, it was the subject of a strong and contradictory discussion the last day of the last conference that elaborates the CRPD and it is also a very actual debate in our NGO in the discussions we have for the revision of our Constitution.

I am not in favour of a definition of disability in the DPI constitution because DPI is not "Disability International", but "Disabled Peoples' International", because we are fighting against disablement causes and not against disability, and finally because the people who want and need a definition are not the disabled people themselves but those who are not. But there is two ways I encourage participants to explore and to practice: The first one cost nothing more than a daily vigilance on the words we use to describe the world and its residents; this is the semantic way and we are here to consolidate it. The second is participation, because we all have to learn how to live together, and because there is no better way to learn to live together than to make it together.

We know since the adoption of the CRPD in December 2006 that a disability is a "long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder (...) full and effective participation in society on an equal basis with others.", and now the issue is not to know "what is disability", but "what to evaluate?", “what to compensate?” “Witch practices to change and to adopt for the enjoyment of Human Rights by all?” With other words, as it is usual that a person is resumed to one of her/his negative characteristics ("A disabled"), the danger of an approach focused on the “dis” (ability, functioning …) is that the question "what is disability" conducts people and media to understand the answers to that question as a definition of the people living with an impairment, and the criteria of "what is disability" has the risk to became criteria to define "who is a disabled person".”

All people have the same rights, whatever their present or absent abilities, and if the first objective was to create the conditions of a possible life for those who need, the actual one is now to build a world where theses people can enjoy their life as everybody. Now the CRPD is written and adopted, the issue is to identify the supports that a person needs to enjoy his/her Human Rights, and to evaluate his needed supports it is necessary to measure the personal and social consequences of an impairment or a disease in his living context, but not only that; An evaluation of potentials and capabilities is also needed. There are people who are discriminated because they are who they are, with unusual characteristics, and people who need supports to assume their basic needs (Move, eat, wash, communicate ...) and to express their capabilities and talents.

The semantic is a tool that can help us to be more aware of this tendency which constrain us, people with disabilities, to be protected, taken in charge and maintained in separates worlds, like the Chinese village where dwarfs are living together and make shows for tourists (1), or the village in Morocco where any family can let one of its member with a disability with a little amount of money to pay for his or her food. In so-called “developed countries” this places are named with kind words and sometimes located in lovely places, but they fulfil the same objective: Keep people with disabilities away from our eyes and our consciousness.

This universal unconscious feeling of rejection influences the words we use with the same objective; build “special places” for “special people”, people who are different and to whom we don’t want to be assimilate.  After 30 years of using the common words from “disabled” to “disabled people” and now “people with disabilities”, the crucial decision I took for my personal practices was to look at people and how they can contribute; and I understood rapidly that all of us can enrich the world … whatever our abilities. I understood also that in many situations if not all it is not only the person I face who has disabilities, but also me when I am unable to understand her.

The fact is that words are not adapted and are expressing the problematic relationship that Human beings have with their peers who live with an impairment, a disease … and in general people who live with characteristics that remain the fundamental fear of being castrated. As its relatives in other languages, the world disability was introduced to describe a reality that is each day more and more different, because what was not possible yesterday becomes today

Everyone has to understand that, if he doesn’t pay attention, the words he or she use to describe the situation of the people who are stigmatized by the traces of a castration (I.e. Any lose of a part of the body or of the mind), can became the bricks of a wall built by the repressed emotions. It is an innate tendency felt by all and that comes from the life instinct, and to learn how to refrain takes a long time.

The semantic gymnastic we all need to do can be initiated by new rules, saying for example that the objective is not to identify the causes of disability, but the barriers that prevent expression of capabilities and talents. To make Human Rights accessible to all and to empower the community the objective is not to make people similar but to empower each and encourage all to contribute to the fantastic collective adventure of life. By facilitating the contribution of people who learned how to live with less or different abilities, the community don’t only help us but also empower itself. There are not people who help others, but only people who support each together, no able and disabled people, abilities and disabilities, but only people with different abilities.

In that way, it is not an evaluation or a definition of what doesn’t exist which has to be done, but the evaluation and the definition and the measure of what is: abilities.

Jean- Luc Simon

Chairperson of Disabled People’s International- Europe