By Charlotte Williamson OBE
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Additional resources for Towards the Emancipation of Patients: Patients' Experiences and the Patient Movement
Alford’s ‘community’ were the American uninsured poor who had no or little healthcare. To be repressed is to be checked or restrained in advance, to be prevented from speaking or acting (Little et al, 1936). Repressed interests, Alford said, were not served by social or political structures (Alford, 1975). In the US, as in the UK, social structures that could promote or support patients’ interests were sparse in the 1960s. Patients had started to form patient groups, but there were few people who could speak for patients’ interests; and those few were easily cooptated by more powerful interest holders (Alford, 1975).
To be radical, a group or individual must analyse patients’ interests as patients define them, or as they would define them, if they knew they were threatened. Conservative groups and individuals support dominant interest holders’ interests by accepting their ideologies and ways of doing things, their policies, practices and standards. Their position is the easier. But sometimes their acceptance may be unconscious, in the sense of not deliberately thought out. 38 The patient movement 2. Because radical positions require thought and effort, it can sometimes be hard to tell the difference between conservative views that are held from conviction and conservative views that are held because their holder does not know enough about the topic to challenge or oppose the status quo.
It prevents them from acting as moral agents, with responsibilities 23 Towards the emancipation of patients for themselves, their families and all the other people, known and unknown, to whom they are connected in various ways. Repressing patients’ interests by withholding information is like trying them in a secret court, without the patients even knowing that they are on trial, and so without giving them an opportunity to defend their interests. It is unjust and leads to other injustices. 2. Lack of social and political arrangements Patients collectively lack social and political arrangements or structures to help them identify and explain how some of the healthcare they experience, or are denied, affects their interests, as they define those interests, or would define them if they knew they were threatened.