Self-advocacy

Self-advocacy refers to the civil rights movement for people with developmental disabilities, also called cognitive or intellectual disabilities, and other disabilities. It is also an important term in the disability rights movement, referring to people with disabilities taking control of their own lives, including being in charge of their own care in the medical system. 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 led by a national organization called Self Advocates Becoming Empowered (SABE) and supported by a relatively small number of 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. In the UK for example, the government has largely contributed to encouraging patients to become more active. The government has focused on developing information services such as NHS (National Health Service) Direct and NHS Direct Online.

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 speak 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. Self-advocacy is 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.

Opposition to self-advocacy

The role of the internet in contributing to self-advocacy

Many claim the internet is a powerful tool for self-advocacy. This is because one may be able to research the risks and benefits of a number of different treatments. One can also use it to become better informed of a variety of explanations of one's illness. Patients are able to create their own web pages to provide knowledge about illnesses and build support communities.

Nevertheless, Henwood, Wyatt, Hart and Smith[2] challenge the extent to which others claim the internet is able to promote self-advocacy. They did research on thirty-two women wanting to know about how HRT (Hormone Replacement Therapy) could relieve menopausal symptoms. They point out that to become informed of one's illness and treatments in this way, requires having skills to be able to access this information using the internet in the first place. Also, one has to start out with some knowledge to distinguish the usefulness of different types of information and decipher what information is valid. As one of their research participants claimed, much information can be gotten from the internet but unlike a doctor, the internet is unable to answer questions about specific information found. Henwood et al.[2] felt that strategies that the patients used for searching for information on the internet were unsystematic. Therefore, research participants were unaware of the commercial interests many sites had. For example, many sites created by lay people are sponsored by large pharmaceutical companies in return for the site's promotion of their drug.

How the patient-doctor relationship affects self-agency

Whether public intellectuals can help promote self-agency

List of attributes of public intellectuals and how these may help promote self-advocacy

Why public intellectuals may not be able to promote self-advocacy

References

  1. ↑ Zola (1975), ‘Medicine as an Institution of Social Control’ in Cox and Mead Ed. A Sociology of Medical Practice, London: MacMillan
  2. 1 2 Hart, Henwood, Smith and Wyatt (2003), ‘“Ignorance is bliss sometimes”: constraints on the emergence of the “informed patient” in the changing landscapes of health information’ in Sociology of Health & Illness, Vol.25 No.6
  3. 1 2 Alexandra, Dundas and Todd (1989), Intimate Adversaries: Cultural Conflict Between Doctors and Women Patients, Philadelphia: University of Pennsylvania Press
  4. 1 2 3 4 5 6 Geraghty and Parsi (2004), ‘The Bioethicist as Public Intellectual’ in The American Journal of Bioethics, Vol. 4 No.1: W17-W23
  5. ↑ Whipple (2005), ‘The Dewey-Lippmann Debate Today: Communication Distortions, Reflective Agency, and Participatory Democracy’ in Sociological Theory, vol. 23, no. 2, June
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