Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center
By June Isaacson Kailes
This is an except from Putting Advocacy Rhetoric Into Practice: The Role of the Independent Living Center (Word document).
“This role is core to the ILC mission and philosophy. We must militantly guard this dual commitment!”
This monograph is intended to reinforce the importance of both individual and system/community advocacy. Its emphasis will be on systems advocacy with independent living centers (ILCs). The major areas to be discussed include: examination of the importance of advocacy, establishment of an effective advocacy approach, development of new consumer leadership, and identification of advocacy questions needing further attention and debate.
It is no secret that the independent living movement is being criticized by disability rights advocates who charge that:
- The commitment of center board and staff members to advocacy is waning and ILCs are becoming no different than traditional human service agencies.
- The fervor for changes in “the system” is being crushed by bureaucratic, administrative, and contractual compliance concerns.
- ILCs have absorbed and quieted many effective advocates and have played a role in draining the disability rights/independent living movement of advocates.
We in the independent living movement need to ask ourselves if these are valid criticisms. Are we losing sight of a fact pointed out by Peg Nosek, Justin Dart, and Yoshiko Dart that our society still uses, as it “has traditionally used, an extensive and sophisticated program of psychological, physical, and economic threats, punishments, and barriers combined with rewards that force people with disabilities into segregated situations and subservient roles” (Nosek, Dart, and Dart, 1981)? It remains critical for ILCs as well as others in the disability rights movement to devote a portion of their financial as well as personnel and volunteer resources to consumer and public education and to consumer and class advocacy in order to abolish these disincentives to independent living. Given these concerns, it is important to start this discussion with a review of the importance of advocacy.
Why Advocacy Is So Important
The development and growth of the independent living movement, including ILCs, has been significantly influenced by a social and civil rights movement that viewed as intolerable any continuation of discriminatory, patronizing, and unjust treatment of people with disabilities. This movement is not unlike the movements of other people seeking independence. It is a struggle by those of us with disabilities to control our own lives; to have equal access to decision making processes in our communities, states, and country; to be protected from discrimination under law; and to be seen as equals and fully human by our society (Kailes, 1986).
We have come a long way, and we need to take time to acknowledge our accomplishments. For a decade or more, many of us have participated in activities on many fronts, and remarkable progress has been achieved, including formal recognition of our rights as expressed in Section 504 of the Rehabilitation Act. However, complacency is dangerous, and we must keep in mind that we have a long, challenging way to go before all of us are treated as first-class members of society. Our objectives remain justice and equal rights!
To quote Justin Dart, “We must demand that this country recognize in law and in fact that disability is a common characteristic of the human process, and that people with disabilities have the same rights and same responsibilities as other people.”
Millions of potentially productive people of all races and ethnic groups who have disabilities are still excluded from the mainstream of society and denied equal opportunities to employment, transportation, recreation, cultural activities, and community involvement. They are still condemned to an existence of unjust, unwanted, and degrading dependency (Dart,1987).
Lex Frieden has pointed out that most people with disabilities are still underemployed and underpaid, and many are not employed at all. It is great that there are eight million people with disabilities who are working, but what about the eight million who consider themselves too disabled to work or who are so discouraged that they are not even looking for work?
What about the fact that it may still take more than a week to get: an interpreter for a person who is deaf; a reader for a person who is blind; a respite worker for a person who is mentally retarded or elderly; an attendant, paratransit, a ride on a lift-equipped van for a person who has no other means of transportation; and medication for somebody with acute symptoms of an emotional disability? And who can predict how long it will take to locate affordable and accessible housing and to get full access to transportation, recreation, cultural, and leisure time activities?
Insurance companies pose another problem in their reluctance to insure people with disabilities since they consider us to be “damaged goods” (Frieden, 1987).
Ed Hooper, writing for THE DISABILITY RAG, urges us to be aware of the fact that fear can truly paralyze us. Our situation is parallel to the blacks’ fight for equality–“the cause is right, but the fear was what if those white folks turn on us?” Blacks were justified in those fears…. The noose waited for many of them, i.e., the white man’s backlash! We have a duty to every person with a disability and to every person without a disability to make the truth of our oppression real; not to settle for less, regardless of the backlash! Hooper observes that although many of us depend on someone else for our care, “If we agree that the status quo is unacceptable, we must affect change, or start wheeling back to our place in society’s shadows and corners.” We are still fighting for control of our lives, for options. According to Hooper, we “need a system that doesn’t overwhelm us with fear of reprisal regarding our personal lives.” We have lived with suppressed and unidentified anger long enough (Hooper, 1987)!
Frieden points out that we “remain far away from clear, strong, consistent, enforceable standards for addressing discrimination against people with disabilities.” Let’s be disability proud! Let’s be vigilant in our views about equality! Let’s refuse to compromise our basic rights as human beings! Let’s go forward, united regardless of disability type and our other differences! Let’s demand equal opportunity, human rights, equal rights, equal protection, and equal participation (Frieden, 1987).
To carry out this mission, independent living centers must be committed to establishing and maintaining effective advocacy approaches.
Advocacy And Services: The Dual ILC Commitment
When viewing advocacy from the center’s perspective, one must look at both direct services as well as systems advocacy. Just as systems advocacy should be one of the essential missions of an ILC, it must also be seen as an approach that is integrated into all aspects of direct services.
Consumer Involvement in ILCs
Advocacy and consumer involvement, that is, involvement of people with disabilities, users of center services, and beneficiaries of center advocacy, are the cornerstones of the independent living movement. It is a firm belief of leaders of the independent living movement that peer-conducted services are essential to assisting a person with a disability. Therefore, in ILCs, 51 percent or more of the members of the staff and boards of directors are people with disabilities who have personally experienced civil and human rights, attitudinal, economic, physical, and communication barriers. Their experiences result in unique commitments to assist others with disabilities in achieving lives of dignity. Staff members serve as role models, demonstrating that it is both possible and desirable for people with disabilities to be productive and independent.
The understanding, guidance, support, and advocacy provided through centers gives others confidence to take the first steps toward their own independence. Without advocacy and consumer control there is no movement. Independent living was founded as a consumer movement and has been guided by the principles of consumer control and involvement since its inception.
ILCs both provide services and advocate for change in their community. This unique dual goal of service and systems advocacy meets the needs of people with disabilities in ways that traditional social service and rehabilitation programs do not. ILCs must function as community advocates. This role is core to the ILC mission and philosophy. We must militantly guard this dual commitment!
Consumer Advocacy’s Place in Direct Services
Consumer advocacy is mentioned only briefly in this monograph to distinguish it from systems advocacy. Because of its importance, however, it deserves more attention than can be devoted to it here.Within most ILCs, two kinds of advocacy exist: systems, or community advocacy, which will be described in the next section, and individual, or consumer advocacy. Consumer advocacy includes activities conducted to meet needs of specific consumers and involves working with individuals who are experiencing discrimination or other difficulties in securing services. Consumer advocacy typically focuses on providing training, information, referral, and intervention for individuals.
Examples of consumer advocacy include: helping an individual secure a railing on steps into a building, obtaining curb cuts, lengthening of a traffic light so the consumer has ample time to cross a street, having “handicapped” parking spaces set aside at the local market, etc. Other activities include assisting individuals who may be eligible for, or are having difficulties with, government benefit programs or benefits provided through other nongovernmental agencies. Assistance is often given following completion of an application for benefits and with mediating a variety of difficulties regarding denials, overpayments, terminations, or changes in an individual’s service or benefit status. If individuals are experiencing difficulty with legal systems about problems that are disability related, assistance is given to help them understand and pursue their legal rights according to federal, state, and local laws and regulations.
Fostering Self-help Assertion and Survival Skills in Consumers
In consumer advocacy, the goal of helping people develop knowledge and skills necessary for them to advocate for themselves is of prime importance. Such knowledge and skills can include being able to confront unacceptable conditions that infringe upon daily living activities and opportunities, learning how to appeal an agency’s decision, lodging a formal complaint, and filing a law suit.
The first tenet of our movement is the right to control our own lives. A portion of the movement is motivated by feelings of frustration, anger, and rage aimed at “helping professionals.” These feelings are elaborated on by Robert Funk: Supposedly apolitical ideologies of the helping professionals in fact mask operations of well-developed industries with a vested interest in the expansion of their areas of control. Thus, one reason for the significance of self-advocacy by disabled people lies in the fact that it is a direct threat to the millions of people who inhabit the helping professions.
Traditionally, the helping professions saw themselves and were perceived by disabled adults and parents as the trained experts. This is a result of their education and socialization into the helping profession (Funk, 1986).
In response to seeing the tremendous inadequacies of these apolitical ideologies and those with vested interest in control of the social service industry, the independent living movement developed its steadfast commitment to consumer self-direction. This again was in direct contrast to the more traditional and sometimes paternalistic social service and rehabilitation models in which the “client/patient” is highly dependent on experts. In independent living, service coordination is considered to be the consumer’s responsibility and is performed by the consumer to the greatest extent possible. The staff’s role is to provide only what relevant training and problem solving is needed in acquiring and using services until the consumer becomes self-reliant. The move from dependence on staff to self-direction marks the shift from “client/patient mentality” to “consumer mentality.” The former involves accepting without question the “superior wisdom of the experts–trusting and obeying.” The latter involves individual goal setting and personal choices regarding lifestyle, vocation, and advocacy. In ILCs, people are not labeled “cases” to be managed as in case management. They are people to be empowered to oversee their own service acquisition and coordination.
An Illustration of Consumer Empowerment
Consumer empowerment always needs to start at the direct service level by enabling consumers. What does this mean? An example might provide the clearest explanation. If, for example, a woman needs an interpreter for an interview with a vocational rehabilitation counselor, the ILC staff person who is counseling her might handle it in one of three ways.
- The simplest way to handle it would be to tell the consumer in this situation that she has a right to an interpreter and refer her to the interpreter coordinator.
- A second approach would be to go a step further by not only informing the consumer of her right to an interpreter but also making the request for an interpreter on behalf of the consumer.
While both of these approaches meet part of the consumer’s needs, neither one empowers the consumer to be more effective on her own behalf.
- A third and more effective approach to the problem would be to explain to the consumer that she has a right to an interpreter, explain how to request an interpreter, and provide the consumer with information on the federal laws that guarantee availability of an interpreter for counseling services related to vocational opportunities. The recourse available to the consumer in the event that the vocational rehabilitation counselor resists having an interpreter should also be explained. This recourse might include appeals to vocational rehabilitation administrators at higher levels and, perhaps, legal actions. It may also take the form of the consumer working with the ILC staff to organize other consumers experiencing the same barrier in order to brainstorm ways to deal with the issue.
By learning how to take control, consumers gain skill and power. Once they are informed of their rights, perhaps they will feel angry that the vocational rehabilitation counselor did not suggest an interpreter as an automatic reasonable accommodation. The channeling of anger on the part of the consumer into constructive organizing is an important motivator in nurturing advocacy efforts. People who are uncomfortable and angry are more likely to take action. In other words, the ILC has helped consumers to identify a problem and to increase their power in terms of their ability to change and affect the situation.