Epistemic injustice in dementia and autism patient organizations: An empirical analysis

ABSTRACT

Patient organizations (POs) represent patient collectives in health care policy. The inclusion of people with a ‘neuro-psychiatric’ condition poses a particular challenge for the organizational processes and political representation of such collectives. In recent years, new POs (POs of) have been established in the field of autism spectrum disorder and dementia that advocate a different agenda and have a different organizational structure than traditional POs (POs for). The divide between these two types of POs indicates a different standpoint with regard to who should be included on an organizational level, which voices are accepted and who should represent these voices on the political level. The inclusion and exclusion of voices needs to be normatively justified in order to be regarded legitimate representation of such a collective. With the help of Miranda Fricker's theory of epistemic injustice, we scrutinize whether and, if so, which types of epistemic injustices (wrongdoings to a person as a knower) can be found within POs' practices and the political field in which they operate, by analyzing 37 interviews with PO representatives, their members and policy makers. Our in-depth analysis indicates that persistent stereotypes hamper the inclusion of affected members both within POs and on the health political level. Being affected causes distrust in having the ‘capacity to know' in a two-fold way; it is assumed that those who can represent themselves are “not affected enough” to present valuable insights into the condition and those who have difficulties to express themselves due to their condition are excluded because of their affectedness. We conclude that our analysis of the epistemic practices of POs serves as a good starting point to address these shortcomings from a theoretical and practical perspective and offers a valuable starting point for bioethics to understand unjust structures in the health political context.

KEYWORDS:

• Bioethics
• Qualitative Research
• Patient Organization
• Dementia
• Autism
• Injustice

Acknowledgments

We thank the participants of our study for being willing to share their time and experiences with us. We thank Aviad Raz, Nitzan Rimon-Zarfaty,Thomas Schramme, and Matthé Scholten, who have been so kind as to discuss and comment on earlier versions of this article. The authors take full responsibility for any mistakes or errors in the final article.

Author contributions

All authors have contributed substantially to the conceptualization, design, data collection, analysis, and writing of this article. KJ and ES analyzed the empirical material on which the first draft of the article was based. SS has given critical remarks for revision and analysis. All authors agree upon the final version for publication and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Funding

This study is funded by the State of Lower Saxony, Hannover, Germany, grant 11,762,519,917/14 (ZN3010), which we gratefully acknowledge. The funding did not have any influence on the conduct, design, collection, analysis, and writing of this article.

Conflicts of interest

None.

Ethical approval

This study was approved by the institutional review board at the University Medical Center Göttingen.

Notes

¹ We use the term “PO” in this article as a formalistic umbrella term, while being aware that the term “patient” is contested by some affected members, which is also reflected in our own findings (see further discussion). However, alternative terms such as “disability organization” or “self-help,” “advocacy,” or “consumer groups” result in other labeling problems. As our focus in this article is on the health context and we critically reflect upon the implications of being affected, we suggest that “patient organizations” provides a helpful analytical formal category to address the collective of affected persons in the health context.

² Also, the term “neuropsychiatric“ is contested, and is used in this work as an analytical term to capture the similarities between dementia and autism. This should not be understood as the authors' support of the medicalization of both conditions.

³ In this article we use the term “affected” as affected by the condition, or “patients,” to refer to all people on the autism spectrum and people in all stages of dementia, but not to family members and caretakers.

⁴ Autism spectrum disorders (ASD) are a set of diverse neural development variables that are characterized most commonly by having difficulties with social interaction. Autism is increasingly described by the autistic community, and by some clinicians and researchers, as a condition rather than a disorder. While it is a topic of debate how one should refer to people with autism (e.g., Kenny et al. 2015), we chose to follow “identity-first language”: Both published reports and our interviewees have indicated that this term is preferred by most autistic people (Kenny et al. 2015; Waltz et al. 2015).

⁵ We follow here affected people's first language for referring to their condition: “people with dementia” instead of “demented patients,” as those affected understand dementia as something they additionally have but does not represent the main characterization of their personality. See also Washington State Developmental Disability Council (2009).

⁶ Fricker argues that when one is suffering from a disease that is not yet well understood or not diagnosed, which does affect social behavior, and affected persons are suffering from the resulting consequences, we should not call this hermeneutic injustice, but a case of epistemic bad luck (Fricker 2007, 152). Note that our point here regarding autism and dementia is different: It is not (solely) the case that these conditions are not diagnosed or well understood. The problem lies in how the experiences and understanding of those who are “affected” are dealt with.

⁷ In 2003, the Law on Modernization of the Health Insurance legislated patient involvement in the Federal Joint Committee (Gemeinsamer Bundesausschuss, G-BA), the highest board for decisions concerning which medications or provisions are covered by the public health care system. A more recent Bill of Patients' Rights seeks to strengthen POs as participants in regional and national committees of health care policies (Gemeinsamer Bundesausschuss 2013).

⁸ In other words, hermeneutic injustice occurs when social groups are unable to dissent from distorted understandings of their social experiences because they are obstructed in their efforts to claim recognition for harm that is caused to them. When, for example, the language and practice of “sexual harassment,” “racism,” “homophobia,” or “sexism” had not achieved common understanding as hermeneutic terms, an entire range of harmful experiences could not expect communal uptake. People whose experiences can now be classified and responded to under these descriptions were previously hermeneutically marginalized (Fricker 2007, 153).

⁹ The neurodiversity movement has its roots in the 1990s, and often is generally credited to Judy Singer, a sociologist diagnosed with Asperger's syndrome. The movement represents a shift from a psychoanalytical understanding towards a neurobiological and/or genetic understanding of autism. Starting in the 1960s, parent-led organizations aimed to obtain care and treatment for their autistic children. In response, autistic self-advocacy groups organized themselves to counteract the parents' POs, which focused on teaching autistic children to adopt the rules and conventions of their (social) surroundings. In contrast, they brought forward the idea of understanding autism as a social reality (like sex or ethnicity) and promoted treating autistic people with respect. See also Ortega (2009).

¹⁰ Emphasis added.

¹¹ Fricker does not refer to the relationship between experience and knowledge in her work on epistemic injustice, but we are aware that there is an ongoing debate with regard to the value of “experiential knowledge” (see, e.g., Blume 2016).