Colleagues in the Latin American disability movement have been quick to point out when something looks to them like "assistencialism". I looked this up and found several references, including one in Paulo Freire's Education for Critical Consciousness, that associate "assistencialism" with colonialism, treating the person as a passive recipient of aid rather than an active transformer of his or her environment.
Assistencialism is a good concept to use to critique projects that are being developed in relation to the CRPD. Is this a project that people with disabilities in the country where the project takes place control? Are there hierarchies among people with disabilities in the project that mean some of them are relegated to the position of passive recipients of the project formula, of the terms of reference, etc., that someone else has designed for them?
Assistencialism can be contrasted to the kind of support that we envision in relation to CRPD Article 12, and the exercise of legal capacity. We assume that everyone has an equal right to make decisions - an equal right and an equal ability, respective to one's own circumstances, to exercise self-determination, to be the transformative power in one's own life, to be the filtering consciousness and the choice of where to put energy, to act on choices and not be acted on by others in one's act of choosing. This right is violated when the law does not respect a particular person's right to make decisions, and also when the law does not protect a person against economic and social circumstances that narrow the possible choices to an intolerable oppression. Everyone's choices are limited by the choices and rights of others, but poverty, discrimination, corruption, systemic violence and other such conditions can effectively deprive a person of the right to exercise self-determination even if she or he has not been deprived of legal capacity in a formal sense. The right to self-determination and legal capacity can also be violated when a person does not have access to support that she or he needs, given the particular individual circumstances, to make choices that are meaningful to him/herself.
Article 12 support is not euphemistic "support" that assumes a person can't do it for him/herself but needs to have his/her ego propped up by being formally in charge. It is support that is obligated to play a secondary role not only by keeping offstage but by placing the other person's needs and wishes at the center, to the extent of defining what kind of support the supporter will give. It is not about feeding lines to the actor, but finding out what the person wants to say and do and helping him/her to say it and do it.
Support could be turned into assistencialism if it gets lazy, if it is only about how something is characterized in an official report, or if it is pretextual from the beginning (e.g. if the supporter really wants to maintain control over the other person). In the same way, projects that offer support should be critiqued by communities - and communities should either find a way to avoid donor funding, or donor funding will itself have to change to internalize the principles of support and reject assistencialism. Much of the funding going to projects related to the CRPD qualifies as assistencialism rather than support, putting resources to technocrats rather than communities, and manifesting disrespect for communities. This can happen at many levels, from decisions about the scale of projects to the question of whether an organization is run by its members or by unaccountable and assistencialist staff.
Another manifestation of assistencialism is in mental health reforms, both reforms of "mental health law" and "de-institutionalization". Any reforms that maintain the lawfulness of detention in psychiatric institutions, under any circumstances, maintain the assistencialist paradigm - treating people in psychic distress or crisis as "mental patients" rather than as people undergoing a transformation who remain active through this transformation. The same is true of de-institutionalization that transfers people to smaller group homes outside the large institutions, but still supervised by mental health workers. Defining people as patients deprives them of the need and opportunity to take responsibility for their choices beyond the limits prescribed to them by the mental health system. While some people may want group living and even a certain kind of supervision (as in monasteries), this should be treated as a choice and not as social policy.
For Freire and other writers on assistencialism, responsibility is inextricable from subjectivity and subject-hood. Freire talks about transitive consciousness, consciousness of one's environment that is necessary to transform it. Consciousness does not have to begin in any particular place or with any particular scope, it could start with the forest or with any tree. Support, like education, needs to meet the person at the point where his/her consciousness begins, and feed the continuing expansion without force-feeding.
The concept of assistencialism and its contrast to the kind of support we envision for Article 12 (and in general) should be incorporated into our analysis in the international disability community. I would also be especially interested to hear more from Latin America about how they use the concept and whether it can help to make a bridge of understanding with other human rights constituencies.