Statement of Philosophy
Dick Goodwin
The independent living philosophy is a radical departure from the traditional rehabilitation paradigm. At the heart of the independent living philosophy are core values including cross disability, consumer control, self help and peer support, and equal access to society. In their broadest sense the goals of the independent living philosophy are empowerment and self determination for individuals with a disability, and achieving equal access through barrier removal and reduction in the community. The expected outcome is independent living and full community participation for persons with all disabilities.
The independent living philosophy is a response to the existing community barriers, low expectations, stigma, prejudice, discrimination, and other social and political restrictions which tend to limit persons with all disabilities from fully participating in their communities. The philosophy is also a response to a patronizing social service system that values academic credentials more than personal experience as a knowledge base for disability issues. American laws and policies have historically kept persons with disabilities in restrictive living environments and encouraged segregated social, political, economic, educational, transit, and communication barriers with massive amounts of funding. Recent legislation regarding fair housing and the Americans with Disabilities Act are laudable efforts to deal with the massive discriminatory practices which have been rampant in this country. Integrating citizens with disabilities has not been an American priority.
Pursuing a comprehensive, logical approach to the issue of disability in America requires defining disability in relevant terms. Typical definitions of disability, including traditional definitions related to independent living and vocational rehabilitation, refer to an impairment that results in loss of function in one or more major life activities (walking, seeing, hearing, learning, etc.) The implication of that definition is that what limits people with disabilities is the inability to see, walk, hear, etc. Whereas that has obvious validity, the evidence is clear that people with disabilities can live full, productive lives if, a) they learn effective coping and management skills related to their disability, and, b) their living arrangements and community environment are open and accessible. The "solution" to full community participation is community based, not physiologically or functionally based. Hence, a more relevant definition of disability is appropriate to the independent living movement.
A meaningful definition of disability must consider the barriers identified in the independent living movement that impose limitations on persons with disabilities, and realize that in the public sector a disability does not of and by itself limit a person's ability to participate. Given the proper environment and the skills to manage and cope with a disability a person with a disability can participate as fully as a nondisabled person. Additionally, a definition must not be static but should realize that depending on the variables mentioned above, people's independent living status at a given time and place in history will vary accordingly. For example, a person with the necessary skills to manage his or her life with a disability who lives in a city that has achieved a high level accessibility would be very independent. However, if he or she traveled to a community that was less accessible he/she would be less independent. The disability does not determine the level of independence, independent living skills and the environment do. The major barrier to independent living and the reason barriers are slow to fall has to do with the lack of awareness, low expectations and prejudices of the general public and community leaders about persons with disabilities. The general public has, over the years, had minimal contact with persons with disabilities. American laws and policies that provide vast sums of money have effectively excluded us from participating in integrated community programs and restricted our contact with the nondisabled world. It has always been acceptable and normal to exclude us from integrated opportunities for education, jobs, recreational opportunities, transportation, housing, shopping, voting, worshipping, etc. Given these facts, the following definition of a person with a disability seems more appropriate:
Person with a disability- A person identified as having an impairment(s), who, as a result of community barriers, low community and self expectations, stigma, prejudice, and discrimination, has limited choices regarding participating in a variety of integrated social roles, including roles related to getting an education, working, living independently, participating in routine commercial activities, worshipping, using public transportation, political activities, and related roles.
This definition is equivalent to a "statement of the problem", and changes the focus from inability to walk, see, hear, etc., to the following:
1. Societal barriers become the major limiting factor to integrated independent living.
2. Societal barriers are not "carved in stone" and are subject to change through disability awareness, technical assistance, advocacy, and educational efforts.
3. Persons with disabilities have some ability to accept or reject the low expectations projected upon them by a community and, even in the midst of prejudicial treatment, can participate in a broad range of integrated social roles.
The objectives, values, and service delivery approach associated with the centers for independent living follow logically from this definition.
To influence equal access and the removal or minimization of community barriers, a proper mix of community services is necessary. Community services might include disability awareness, advocacy, technical assistance, participating in high profile roles, use of media, and outreach, all provided primarily by role models with disabilities who are known in the community and actively pursuing integrated community living options. The community is not only being educated, they are seeing first hand a person with a disability who is fulfilling a variety of integrated roles. Additionally, to influence persons with disabilities to expect more of themselves than society expects of them requires a proper mix of individual independent living services. Peer role models, those pursuing a variety of social roles, working as service providers present irrefutable evidence to persons with disabilities that it is possible to achieve more than is expected by the general public. People seeking to come to grips with their disability view as most credible the information presented by a peer with a similar disability who has "been there". Peers who have learned to manage the routine daily requirements of a disability are also the logical teachers of the skills necessary for living independently in the community. And, the types of information available at programs run by persons with disabilities is most likely to be the kind of information persons seeking their own level of independence will find helpful in pursuing those goals.