82.9 percent of women with rheumatic diseases and disability say they have suffered institutional violence in the health care system during the last year. Among the most frequent forms of mistreatment cited by the 287 participants in the study prepared by Reu+ together with the National Council of Women of Spain (CNME), within the European POWER program, stand out endless waiting lists, the absence of truly specialized care (57%), information that is difficult to understand (32.7%), and infantilizing treatment (23%).
The document defines institutional violence as any action or omission by an institution that violates women’s rights or makes it difficult for them to exercise them, failing to comply with the State’s duty of due diligence. It is a legal notion included in Catalan regulations against male violence, which makes it possible to differentiate an isolated episode from a pattern that repeats itself systematically.
The repercussions go beyond the medical consultation: seven out of ten respondents (70.4%) state that they trust institutions little or not at all. In addition, 72.7 percent indicate that they present symptoms of depression and 58.5 percent report frequent anxiety. The authors of the report do not consider this distress as a preexisting condition of the patients, but as a direct effect of how the system is organized, an interpretation supported by the results of the survey, the discussion group, and the in-depth interviews.
The impact also extends to the workplace. Almost half of the women consulted (48.8%) declare having suffered discrimination because of their disability and more than half have been forced to reduce their hours, change positions, or leave their job.
The research identifies among the main causes the gender bias in health care, the tendency to attribute women’s symptoms to anxiety before completing diagnostic tests, the lack of visibility of organic disability, and an assessment system that examines patients when they are in remission, that is, at their best moment, and not during disease flare-ups.
The report also underlines the existence of an "institutional blind spot": the regional administration interviewed, responsible for assessing disability, denies in writing that there are gender differences in that procedure, despite the evidence collected in the survey, the discussion group and the interviews. "If you do not assess, there is no guarantee," summarizes Eugènia Bretones Espejo, president of the CNME and co-researcher of the study.
This work serves as the basis for the Political Advocacy Plan of the project and proposes, among its measures, mandatory training in gender and disability perspective for health, judicial and social services staff; specific assessment protocols for pathologies that manifest in flare-ups, with periodic reviews and the option to assess in the midst of a flare-up; as well as effective control of the duty to adapt workplaces, also within the public Administration itself.
Likewise, it proposes the systematic collection of data disaggregated by sex and type of disability; the use of parliamentary appearances and of the legislative reforms under way to convey the evidence obtained; and the recognition of institutional violence as a public health problem that requires an urgent response.