Self-advocacy

Self-advocacy is an important term in the disability rights movement. It is also used in regard to patients taking control of their own care in the medical system.

Self-advocacy and disability
Self-advocacy can also refer to the civil rights movement for people who are labelled with intellectual disabilities (also known as developmental disabilities) and other disabilities.

The self-advocacy movement is (in basic terms) about people with disabilities speaking up for themselves. It means that although a person with a disability may call upon the support of others, the individual is entitled to be in control of their own resources and how they are directed. It is about having the right to make life decisions without undue influence or control by others.

People with intellectual disabilities are often some of the most powerless members of society. They may live in large institutions or in smaller residences known as group homes which are staff-directed environments where residents have little or no control over their living conditions or with whom they share their living space. People with intellectual disabilities are extremely vulnerable to abuse due to their social and physical isolation. They are eight to ten times more likely to suffer sexual abuse than the non-disabled population.

The self-advocacy movement seeks to reduce the isolation of people with disabilities and give them the tools and experience to take greater control over their own lives. The self-advocacy movement for people with intellectual disabilities lags far behind many other civil rights efforts, such as those related to race or physical disabilities. This is due to many factors including low literacy and other communication challenges that are a barrier for people with intellectual disabilities.

The self-advocacy movement for people with disabilities has its roots in the broader civil rights movements of the 1960s and 1970s but is in many respects still in its infancy. In North America the self-advocacy movement is supported by a relatively small number or organizations, such as ACT in the United States and LiveWorkPlay in Canada and internationally through the People First organization.

Medical and psychiatric patient self-advocacy
In the medical and psychiatric areas, emphasis is placed on self-advocacy or self-empowerment (patient empowerment). This emphasis started in the psychiatric field during the 1970s, not only to advocate for needed changes in the delivery of services but to encourage patients to take a more active role in their own care.

Similar changes occurred in the medical area, especially in the 1980s with the beginnings of hospice and home care / home health care industries. Patients since the 1980s have been encouraged to become participants in their own care and to become knowledgeable consumers of the services of medical care.

As the medical field has become more complex, along with the myriad of problems with insurance coverage, patients have had to become stronger self-advocates for their own care and for the insurance coverage due in their case. Every time people speaks up for themselves to resolve a problem, they are practicing self-advocacy. Patients should know their rights, and be willing to honor themselves by being proactive in their care. In all medical situations, patients must be given, must read, and must sign medical consent before procedures, tests or surgery. If patients do not understand anything about their care, they should ask questions. The simple act of asking questions and fully understanding what will be done in your care is an act of self-advocacy. Through being one's own advocate there is patient empowerment.

Self-advocacy can include any action, verbal or written, which is intended to outline and describe a particular problem an individual is encountering, and intended to create the interest and action by another person to assist the person in resolving the specific problem. Thus, a person might be self-advocating to an individual (such as directly to a nurse or doctor), to an institution (such as a hospital, clinic, or agency), or to a company or organized body (such as an insurance company or a State/Federal agency.)

Since individuals know their own situations the best, they can often be the best advocates for themselves. It helps if they can communicate a description of the problem in clear and concise fashion, and are able to listen to the responses from the person/agency to whom they bring the problem.

Patients are often more successful at self-advocacy if the particular problem they are describing also connects to some aspect protected under the "Patient Bill of Rights." However, self-advocacy can also resolve other situations, such as differences of opinion between the patient and doctor, or personality conflicts, or even minor problems in delivery of health care.

References (self-advocacy and disability)
Bersani, Hank and Gunnar Dybwad, eds. (1996) New voices: Self-advocacy by people with disabilities. (1996). This book includes many chapters written by self-advocates concerning the self-advocacy movement, and provides a historical perspective, as well as reflections on the current status and future course of the movement.

International League of Societies for Persons with Mental Handicap (ILSMH) Committee on Self-Advocacy. (1996) The Beliefs, Values, and Principles of Self-Advocacy. This booklet talks about the beliefs, values, and principles of self-advocacy, and about the role of support persons. It also gives examples of good practice. It is produced by the ILSMH formed to help promote self-advocacy internationally.

Ippoliti, C., Peppey, B., & Depoy, E. (1994). Promoting self-determination for persons with developmental disabilities. Disability & Society 9, 453 – 460.

Longhurst, N. A. (1994). The self-advocacy movement by people with developmental disabilities: A demographic study and directory of self-advocacy groups in the United States. Washington, DC: American Association on Mental Retardation.

Sands, Deanna J. and Michael L. Wehmeyer, eds. (1996) Self-determination across the life span: Independence and choice for people with disabilities. This book recognizes that self-determination is one of the building blocks of independence for people with disabilities and explores the theoretical, developmental, and practical aspects of decision making.

Self-Advocates Becoming Empowered (1994). Taking place: Standing up and speaking out about living in our communities. Available through ARC Tulsa, 1601 S. Main Street, Suite 300, Tulsa, OK 74119, attn: Michelle Hoffman.

Wehmeyer, M., Bersani, H., & Gagne, R. (2000). Riding the third wave: Self-determination and self-advocacy in the 21st century. Focus on Autism & Other Developmental Disabilities, 15(2), 106-115.

Williams, P. and B. Shoultz. (1982) We can speak for ourselves. This book describes the beginnings of the self-advocacy movement in the United States and in England. Includes suggestions for developing self-advocacy groups.