RESEARCH INFORMATION ON INDEPENDENT LIVING
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Volume 1, Issue 2

Advocacy for Positive Change

Advocacy is the cornerstone of the independent living movement. Yet one center for independent living survey showed that less than one-third of consumers with disabilities have effective advocacy skills

Advocacy is a skill that can be taught and encouraged. Training usually includes instruction and practice in personal leadership, group management, problem solving, issue identification, and negotiation. Knowledge of political structure, parliamentary procedures, and local resources is also helpful.

The active process of advocacy to improve conditions, promote rights, and preserve service benefits typically comes in four forms, according to a 1973 landmark study by the National Association for Retarded Children, United Cerebral Palsy Association, and National Center for Law and Handicapped. These forms are self-advocacy, individual advocacy, systems advocacy, and legal advocacy.

Self-advocacy, a goal for all people with disabilities, occurs when an individual knows his or her civil, service, and personal rights and lets others know when those rights are not being fulfilled or are violated.

If a person cannot self-advocate or needs assistance, then individual advocacy may be used to obtain rights or benefits for another without resorting to the legal process. As an advocate for a person with a disability needing support, a concerned individual can be a witness, listen to problems, tell the individual's story, act as a liaison, translate information that may be hard to understand, help fill out forms, track needed information, and serve in other support roles.

The expansion and improvement of community services that people with disabilities enjoy today came from the efforts of people working together and advocating to decision makers. In systems advocacy, individuals often band together to protect or ensure the rights of a group by promoting a change within the relevant organization. When consumers and others get involved in the service system and community, they can work from the inside to advance their own agenda and broaden others' understanding.

Mary Butler, advocacy and outreach coordinator for LEAP/IL and Shona Eakin, advocacy director at The Ability Center, said effective systems advocacy depends on individuals who learn the system involved and understand applicable laws.

Legal advocacy involves lawsuits and appeals through the legal process.  Resulting judicial determinations applying to one person or group set precedents for future rulings. The collective voice and political influence of consumers has helped pass far-reaching legislation for people with disabilities.

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Those in the disability field agree that communication skills can make or break an advocacy campaign. One experienced advocate recommends accentuating the positive to win friends during advocacy and to assume the best of others, because challenging another's motivation often produces needless resistance. To prevail, consumers must be open to dialogue and compromise.

Another tip when taking a position on an issue is to highlight the general values or principles being promoted, such as access. The importance of these values and principles will be hard for anyone to deny. Positive values lend eloquence to a position that may inspire others. Throughout all communication, keep written records of dates, times, and details.

Developing a positive relationship with the media, too, leads to advocacy success, because the more is known about disability issues and how to communicate them, the more can be accomplished.

 To keep what has been gained, sustained advocacy usually is needed. —  Cindy Higgins, The Research and Training Center on Independent Living, The University of Kansas, 1000 Sunnyside Ave., Room 4089 Dole Center, Lawrence, KS 66045-7555, (785) 864-4095, E-mail:[email protected]. This project funded by National Institute on Disability Rehabilitation Research grant #H133A980048.

Information for this review came from the interactive Research Information on Independent Living (RIIL) database at www.GetRiil.org, which contains research summaries related to independent living with disabilities. A special effort has been made to include information that independent leaders in the field said they wanted, namely topics regarding accessible, affordable housing, effective advocacy for rural areas, effective transition from schools and nursing homes, accessible, affordable transportation, reaching underserved populations, policies that impede independent living, rural health care services, and Medicaid/Medicare regulations for durable equipment.

RIIL is a joint effort of the Research and Training Center on Independent Living at the University of Kansas and the Independent Living Research Utilization (ILRU) Program of TIRR.