THE RIGHT TO LIVE INDEPENDENTLY AND IN A COMMUNITY

by Khalyaan Karunakaran

INTRODUCTION

The right to live independently or in a community, as envisaged under Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), is not a new concept that sprung out of the blue. It began as a movement towards allowing persons with disabilities, the same degree of freedom that persons without disabilities were able to enjoy. Its origins can be traced back to 1962, when Edward V. Roberts, who is regarded as the father of independent living, joined the University of California, Berkeley (although prior foundational work had been carried out by Mary Switzer and Gini Laurie as early as 1934).¹

He became a victim of polio at the age of 14 and due to severe paralysis below his neck, had to use a motorized wheelchair equipped with a respirator.² In spite of such restrictions, with some influence, he was able to help launch a “program for physically disabled students” in the university. After his graduation, since that meant moving away from the facilities available on the campus, with support of family and friends he established the Centre for Independent Living (CIL), which was altogether community centric. This was the beginning of true independent living.

This centre had four basic principles. These effectively stated that people with disabilities:³

1. belong in the community, not the convalescent home.
2. are neither patients to be cured, children to be taken care of, nor brave souls to be admired.
3. should be in charge of the assistance they may require, that is, free to be independently dependent.
4. are victimized by a prejudiced society, not the disabilities they happen to have.

“Independent” means that one can quest for one’s own life through self-choice and self-decision. This “independent” necessitates self-responsibility.⁴

Much of anything else that has developed in the Independent Living Movement continues to carry these four principles and the specific construction of ‘independence’. The work and influence of the movement eventually culminated in the inclusion of a specific provision in the UNCRPD in the form of Article 19.

Looking at the kind of principles that were enunciated and the nature of the independence that was sought to be granted, and what Article 19 of the UNCRPD seeks to establish, wherever the question of enforcing them as a right arises, it will dig up some fundamental issues regarding human independence and interdependence and the right or liberty to choose. This paper will thus primarily look at how such a right is fundamental to human nature and the flourishing of the individual, and

RATIONALISING AND OPERATIONALISING

Life, as we know it, has grown in leaps and bounds since its inception. It started as a few individuated protein molecules which later combined to form a collective of molecules that functioned as one. They, in turn, became a collective called a cell. These cells, again, turned into multi-cellular organisms. Further collaboration resulted in an animal as complex as a human being. The process did not stop there, but continued, albeit on a different plane.⁵ Humans started to convene and thus became a singular entity, which now has many names such as family, clan, tribe, caste, community, society, etc.

The very purpose of all the above instances of collectivisation was to ensure the survival and betterment of the group, as a whole. This aspect, i.e. of combination/collectivisation resulting in a more stable entity, while retaining some individual characteristics that help identify it as a combination of more than one, can be seen in nature from the microscopic to the galactic.

On encountering the word ‘human’, the first image that comes to mind is that of that of an individual organism. The identity of the self almost always overpowers any possible identity that places the self below the identity and interests of a group. The irony in this action lies in the fact that this cognitive response is in fact an association with a certain thought, which is in turn associated with many other thoughts. To be human, is to associate or to connect, and not just be a disconnected individual. The defining attribute⁶ that makes us homo sapiens, i.e. sapience⁷, the process of thinking and the ability to act and choose with appropriate judgement, isn’t something that has to do with a single or solitary component, but rather a process of moving through a series of established connections. Learning, another attribute that helps define what is human, is the associations or connections that are made. Humans are identifiable as individual identities, but this is effectively the sum of all the reactions between many abilities and factors developed through interaction with other individuals.

Therefore, a human can be identified, but cannot exist without the context of that which helps attribute human characteristics. Without a doubt, the context then has to be assimilated to form part of the identity and this results in the fact that that which makes us human is also human, and does not hold an identity that is distinct and separable from ‘human’. ‘Human’ entails the use of those faculties that exhibited by humans in general, and the ability to judge, determine and choose for oneself is paramount to conceiving the entity as having an identity, consciousness, capacity and autonomy.

In Politics, Aristotle’s view that “he who is unable to live in society, or who has no need because he is sufficient for himself, must be either a beast or a god”⁸ must be considered earlier idea, echoed in the words “… things are defined by their working and power; and we ought not to say that they are the same when they no longer have their proper quality, but only that they have the same name.”⁹.

It is clear, then, that a person cannot be said to exist in a void and is always a part of some social structure that evolved to promote collective growth. There may be certain restrictions in exchange for certain benefits in such a system, yet, does a human continue to remain human if he/she is not allowed to exercise those qualities that make him/her human ? This question is part of the undercurrent of Edward Deci’s research in self-determination.

SELF-DETERMINATION

The research of Edward Deci and Richard Ryan on self-determination produced the Self-determination theory which looks at various factors that come into play in the development of an individual or the identity. While it primarily focuses on the concept of motivations and internal drives concerned with supporting our natural or intrinsic tendencies to behave in effective and healthy ways, it also looks at when stifling of individuality occurs.¹⁰ If a right is said to exist, but does not have any space within which it is exercised, it cannot be said to exist. If the identity as and of an individual is said to exist, but is denied the space to express that identity, again, such an identity may as well not exist.¹¹

There are three psychological needs motivate the self to initiate behaviour and specify nutriments that are essential for psychological health and well-being of an individual. These are universal, innate and psychological and include the need for competence, autonomy, and relatedness.¹²

Humans are inherently proactive with their potential and seek to control their inner forces. There is an inherent tendency towards growth, development and integrated functioning and the right development and actions are inherent in humans. However, they don’t happen automatically and to bring out the inherent potential they have, they need nurturing from the social environment.¹³ This environment does not control but only assists with directed development. Exercising control over one’s actions and choices is manifesting the epitome of autonomy, which cannot be avoided.

Inadvertent external control can also arise. Offering people extrinsic rewards for behaviour that is intrinsically motivated undermined the intrinsic motivation as they grow less interested in it. Initially intrinsically motivated behaviour becomes controlled by external rewards, which undermines their autonomy. Situations that give autonomy as opposed to taking it away also have a similar link to motivation. Studies looking at choice found that increasing a participant’s options and choices increases their intrinsic motivation to said activities.¹⁴

Notes

1. https://www.independentliving.org/docs5/ILhistory.html
2. Emiko Nakahara, What is Independent Living Movement ?, Human Care Association https://www.dpiap.org/resources/doc/What_IL_Movement_Emiko_10_03_10.doc
3. Ibid
4. Ibid
5. Darwinian evolution
6. “(Carolus) Linnaeus had originally given humans the species name of diurnus, meaning man of the day. But he later decided that the dominating feature of humans was wisdom, hence application of the name sapiens.” https://en.wikipedia.org/wiki/Sapience
7. Robert J. Sternberg, Wisdom, Intelligence, and Creativity Synthesized, 2003, New York: Cambridge University Press. https://books.google.com/books?id=ReWJZM4H5NAC
8. Aristotle’s Politics, Book I, Part II, https://www.constitution.org/ari/polit_01.htm
9. Ibid.
10.  https://www.psych.rochester.edu/SDT/
11. Supra
12. Self - Determination Theory https://en.wikipedia.org/wiki/Self-determination_theory
13. Ibid
14. Ibid