Independent Living is a philosophy and a movement of people with disabilities who work for equal rights and equal opportunities, self-respect and self-determination. "Independent Living" does not mean that persons with disabilities do not need anybody, that they want to do everything by themselves or live in isolation. "Independent Living" means that disabled people want the same life opportunities and the same choices in every-day life that their non-disabled brothers and sisters, neighbours and friends take for granted. That includes growing up in their families, going to the neighbourhood school, using the same bus, getting employment that is in line with their education and abilities, having equal access to the same services and establishments of social life, culture and leisure. Most importantly, just like everyone else, persons with disabilities need to be in charge of their own lives, need to think and speak for themselves without interference from others.
To this end persons with disabilities need to learn from and support each other, organize themselves and work for political changes that lead to legal protection of their human and civil rights. Traditionally, disabled persons have been seen as medical cases and objects of charity and care, pity and protection. These wide-spread attitudes have been obstacles on their way to self-determination, self-representation and full citizenship.
In order to reach the same control and the same choices in every-day life that non-disabled persons take for granted a number of prerequisites are necessary. For persons with extensive disabilities there are two key requirements: personal assistance and accessibility in the built environment including accessible housing. Without these two necessities persons with extensive disabilities can choose only between being a burden on their families or living in an institution. These extremely limited and limiting options are incompatible with the concept of Independent Living.
Assistance from paid workers enables the user to carry out such every-day activities as bathing and dressing, and going to the toilet; household chores such as shopping, preparing meals and cleaning. Assistants help the user at work, about town and on travel. They assist in communicating or in structuring the day, as the case might be. In brief, assistants help with those activities which the user would have done by himself or herself, had it not been for a physical, sensory, mental or intellectual disability.
People who are dependent on others for the most basic needs of life face prejudices. Given their physical dependency the conclusion is close at hand to consider them as dependent on others also emotionally and intellectually. Somebody who cannot pull up his or her pants like a small child, may be treated as a small child in other respects as well. The result is often over-protection and custodial care where other people make the decisions.
It is no surprise then that the Independent Living philosophy is most easily grasped by people who are dependent on assistance in their every-day lives. This is also the reason why the Independent Living Movement emphasizes the importance of the quality of assistance for users who want to achieve maximum independence. In order to provide an operational definition for quality, the Independent Living Movement coined and defined the term "personal assistance":
"Personal" assistance means that users exercise the maximum control over how services are organised and custom-design their services according to their individual needs, capabilities, life circumstances and aspirations. In particular, personal assistance requires that the individual user decides:
Thus, the individual user must be able to recruit, train, schedule, supervise, and, if necessary, fire his or her own assistants. Simply put, "personal assistance", means that the user is the boss.
It is recognised that users with learning or mental disabilities will need support from third persons with these functions.
Personal assistance enables users to take their rightful place in family, at work and society with all the rights and duties that the general population takes for granted. With personal assistance persons with extensive disabilities need no longer be a burden on their families. Parents, husbands or wives do not need to stay at home and sacrifice their careers. Personal assistance users not only manage on their own, they can also take their share of household and child-rearing. With personal assistance we can attend school and educate ourselves, enter the labour market and become tax-payers. When we fall in love, our partners need not fear that they are about to sign up for a life-long 24 hour job.
Most existing services cannot be called "personal" assistance, since they are not custom-made to the individual´s needs and do not allow control and acceptable choices. Most often users are not in the position to recruit their own assistants. Instead, they have to accept assistance from the available staff. This is true for both stationary institutions or their "ambulatory" counterparts - the community-based services of local governments or voluntary organisations. Inherent in these solutions is their hierarchical structure with the user at the bottom. Users are forced to share the common staff which, in itself, reduces choices and freedom of movement.
Other limitations exist when assistants do not have proper employment contracts and wages. Then, users can neither demand quality work, attention and reliability nor can they feel in charge.
Today, most assistance services control and limit our lives, make us dependent and helpless. The solution is for us to take a position where we no longer have to adapt our needs to the needs of the service provider but instead shape our own services according to our needs. Turning "care" into "personal assistance" requires a fundamental shift in the distribution of power between user and provider. One precondition for this change is an altered self-perception of the user of the services. Instead of seeing oneself as the passive object of other people's interventions, the user needs to be the subject, in charge of his or her own life. The best help in facilitating the change is peer support. The other precondition is having access to the funds it takes to hire one's assistants. Both requirements go hand in hand.
In order to have access to the necessary money we need to rechannel the resources which are used in the disability field today. Instead of passively receiving services, the individual user needs to have the money which these services cost. With the same amount users can achieve a better quality of life. With money in our hands, we can buy services from the provider of our choice. Or we hire, train and fire our own assistants which is the most direct control over service quality.
Services in kind control us, direct payments empower us.
Resistance to the simple idea of direct payments has been strong given the vested interests of many service providers and the wide-spread prejudices against disabled people according to which they cannot act in their own best interest and need to be "taken care of".
Direct payments are truly the state of the art when it comes to enabling persons with extensive disabilities to reach self-determination, integrity and full citizenship.
Presentation given at the HELIOS Study Visit on Independent Living and Personal Assistance in Stockholm, June 7-9, 1996.