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.
Dixon-Woods studied patient information leaflets and found they privileged the biomedical model's explanations for illness and disease. Other models providing information and knowledge about health are therefore ignored. By failing to provide alternatives to the biomedical, model patients are forced to comply with the biomedical model. This means they may not be empowered insomuch as they are not as free to choose between a number of models on health as a result of being unaware of these alternatives. For example, alternative therapies may not be recognized as valuable. This explains how when people do use alternative therapies, they often use them alongside more traditional forms of medicine. Traditional forms of medicine based on the biomedical model are trusted more. Nevertheless, there has been an increase in the use of alternative medicine, so the biomedical model may not be as strong as it once was.
Zola claims there is still evidence suggesting some believe certain information within medicine should be confined to the sphere of the experts. Therefore, if some knowledge or information is excluded from the public, the public lacks power to challenge this knowledge or information. This is because the public could be entirely unaware of the existence of this information or knowledge. In this way the extent of the public's self-advocacy of the public is challenged and the public lacks power. This is because as Foucault claimed, power and knowledge coincide.
Increased medicalization is evident in that everyone believes there are problems with their mental or physical health. This is usually phrased in positive terms of believing their body or health may be able to be improved upon. Responsibility is placed on patients themselves to take greater roles in their own health care through self-advocacy. Nevertheless, medicalization critics say that if our problems are described in biological or medical terms, this overlooks the fact that our problems are often caused by social factors. Medicalization critics claim society is able to relinquish responsibility to solve problems caused by social factors, linked to structural problems in society. They claim that society does so by handing responsibility to patients to seek medical solutions for individual problems. Therefore, self-advocacy may not always be entirely positive.
Lupton questions whether self-advocacy is always possible or even beneficial for patients. He claims that in cases of intense suffering and maybe even possibility of death, for the doctor to take on an absolutely authoritative controlling role may be important as a form of comfort. Ideas on self-advocacy tend to promote ideas of patients as being rational at times of illness, so detached from one's emotions, themselves maybe be produced by one's illness. Nevertheless, such detachment is not always possible. Lack of rationality here may be considered as negative in that it can create dependency seen as weakness. However, Lupton says there are also disadvantages for patients responding with greater levels of self-advocacy. To question the doctor's expert knowledge, can undermine the trust in doctors, and faith in their expert knowledge, needed to comfort the extremely ill.
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 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. 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.
Drug companies claim the role of advertising drugs is for patients to become more aware of options of treatment available. They are then able to ask their doctor about whether the treatment would be appropriate for them. Therefore, there at least seems to be the potential for patients to become more active in their own health care this way by introducing them to different options available.
Fuller claims that despite the public recognizing that certain scientific knowledge in the past has been discredited, scientists still present a history of advancement overcoming past weaknesses. This means the medical model of treating illness and disease is still dominant. Therefore, doctors are treated as experts on medical and increasingly other matters, as the process of medicalization indicates. If an expert fails to be correct, trust between them and their client is broken. Nevertheless, Fuller believes the client is excused too easily after all they have chosen the wrong expert or model of expertise for their case. Therefore, Fuller advocates self-advocacy in patient's relationships with their doctors. Wisdom is required to choose the correct expert. Wisdom is also needed for the expert to present themselves as competent at solving particular individual cases. A problem may emerge however when the expert refocuses the client's problem to correspond to their type of expertise, as opposed to what is needed for the client's individual case. Fuller questions whether scientists' research is valid concerning whether they can get consistent results where these results are important (in cases the results are actually really applicable to).
Alexandra, Dundas and Todd argue many may feel unable to challenge doctors. Doctors are often viewed as having good intentions and as wanting to help patients. Therefore, many feel uncomfortable questioning the form of "help" doctors give them, even if the patient feels the form of help may potentially be inappropriate.
Moreover, Alexandra, Todd and Dundas claim that the traditional sexist view of women as too emotional and irrational is perpetuated by medicine. There is evidence to suggest women's complaints are taken less seriously than men's as doctors view them as over-emotional and therefore, exaggerating their symptoms. Symonds claims doctors feel that when women ask doctors questions, thus being active in their own health care, this is taken as unnatural as women are traditionally considered as passive.
Intellectuals are said to speak on behalf of the public so may potentially promote self-agency concerning health matters. Geraghty and Parsi point out bioethics is especially relevant to the public as science is influencing people's lives further. Therefore, bioethicists can inform the public about these health issues as being very relevant to their lives. To be democratic, Geraghty and Parsi claim the public should be educated on matters, so they can take part in defining and shaping issues.
Intellectuals are said to present their ideas using a variety of different media. Geraghty and Parsi point out bioethicists may need training as part of their course in using a variety of media to become public intellectuals. Though bioethicists academics use a variety of media Geraghty and Parsi point out that this is usually in the expert role. This means the information presented by them is harnessed only for specific concerns taken out of the larger context.
Intellectuals often choose to support ideas for their use value. Fuller points out this is what we should do when judging knowledge given to us by scientists. Scientists are often successful at finding facts, but in medicine the use value of such facts is especially important. Therefore, medicalization critics may question the use value of medicalization claiming disease mongering is taking place. It is said that pharmaceutical companies want more money and power to create new categories of illnesses treatable by drugs already existing. In this way, categories of what is considered normal or healthy become smaller. Medicine intrudes into people's lives more and more exerting greater control and influence when this control and influence may not be necessary.
Intellectuals may uphold ideas that politicize and create new social groups. In this case the intellectual may help patients lacking health insurance barred from certain treatments they cannot afford. Also, they may question how many off-label treatments are not covered by insurance. This means patients who are able to afford it pay themselves, which creates inequalities in health as others do not have the means to do this. Intellectuals may also challenge medicine for possibly claiming illnesses largely caused by structural inequalities, are caused purely by biological factors.
Intellectuals may defend absent ideals like in this case, they may advocate the idea of the patient as taking on a consumer role actively participating in their own health care. On the other hand, intellectuals may defend the status quo. Defending the status quo may not mean they are being conservative but may be supporting fading ideals in society. For example, in medicine's case they may criticize how the health care system now is commercially driven. Therefore, doctors and pharmaceutical companies may be more concerned with profit than patient well-being much of the time.
Intellectuals may contribute to the public questioning if they are mistaken in accepting ideas that are unquestioned as being possibly wrong by society. In the case of medicine, there is proof doctors are not trusted as much. However, the authority of medicine as a whole is still upheld and respected. Moreover, even in relations with doctors patients on the whole still decide to take on passive patient roles. Intellectuals may help the public to question if passively accepting doctors' and medicine's claims is beneficial.
Posner claims intellectuals may question ideas when they have no proof that these could be wrong or may have poor evidence. Indeed, Geraghty and Parsi claim there is a danger of this for bioethicists as bioethics advances so quickly but facts must be established before questioning takes place.
Lippmann claims the public cannot have knowledge about everything so therefore, experts are needed to produce knowledge on behalf of the public and make decisions for them so the public cannot make wrong decisions due to lack of complete knowledge on the subject. Therefore, Parsi and Geraghty say academic experts often see the public as being unable to further academic research interests, or shape academics' intellectual ideas. Democracy for Lippmann consists of the public electing a party in charge who makes decisions for them.
However, Dewey believes though that the public is able to participate in democracy. They can do this by helping create knowledge used by society as a whole. The public is passive in society because they have formed the habit of being passive, not because they are incapable of being active agents. Whipple claims the number of participants taking part in knowledge creation is more imp than variety of ideas discussed.
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.
Conrad and Leiter (2004), ‘Medicalisation, Markets and Consumers’ in Journal of Health and Social Behaviour, Vol. 45 (Extra Issue)
Fuller (2005), The Intellectual Cambridge: Icon Books Ltd
Fuller (2007), The Knowledge Book Stocksfield: Acumen Publishing Limited
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.
Lupton (1997), ‘Consumerism, Reflexivity and the Medical Encounter’ in Social Science and Medicine, vol. 45, no. 3, August
Lupton (1997), ‘Foucault and the Medicalisation Critique’ in Bunton and Peterson Ed. Foucault: Health and Medicine, London: Routledge
Moynihan, Heath and Henry (2002), ‘Selling Sickness: The Pharmaceutical Industry and Disease Mongering’ in The British Medical Journal, Vol. 324, 13 April
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.
Feldman, M. A., F. Owen, et al. (2012). "Health self-advocacy training for persons with intellectual disabilities." Journal of Intellectual Disability Research 56(11): 1110-1121.
