Rupturing “Capacity to Consent”: Toward Anti-Ableist Research Relations
From the Series: Disability as Rupture
From the Series: Disability as Rupture
The email notification arrived in Rebecca-Eli's inbox. They needed to redo their research protocol to indicate that they were working with a “vulnerable population.” Rebecca-Eli started the revision but stopped at the options that popped up after checking the “vulnerable” box, wondering which applied to their proposed interlocutors, adult autistic self-advocates in the United States. “Minority group”? Perhaps, if autism is viewed as a marginalized social identity. “Economically disadvantaged”? Statistically likely but not inherently. Was Rebecca-Eli, themselves autistic, part of a vulnerable population exposed to unanticipated harm in proposing their research? Perhaps. Temporarily setting aside their existential questions, Rebecca-Eli emailed the institutional review board to ask what made their research participants vulnerable. The response came quickly. Underlined and bolded: “those that lack capacity to consent."
Learning that all autistic research participants were classified as lacking consent capacity due to developmental disability, Rebecca-Eli wondered why they themselves were not held to the same standards. The proposed workaround for judging consent capacity involved Rebecca-Eli questioning participants about the consent form to assess their understanding. Yet no one at their university doubted if an autistic researcher could determine consent capacity. Rebecca-Eli was left wondering how they automatically had capacity when their peers did not.
Rebecca-Eli was concerned with how they and their interlocutors were assumed to have different capacities, as well as with the potential for lateral ableism in arguing that their participants could consent. Lateral ableism results from disabled people adopting ableist values about other disabilities (Neumeier and Brown 2021, 79). It was easy for Rebecca-Eli to argue that their interlocutors differed from those presumed “severely disabled”; however, Rebecca-Eli ensured that their research protocol extended to nonspeaking autistics in order to work against the hierarchy of disability that positions some disabled people as more includable at the expense of others.
Meanwhile, a presumption of incapacity among Hannah’s research interlocutors has colored her dissertation since well before she fleshed out her research project. In a seminar to guide PhD students in applying for research ethics approval, a representative from the institution’s research ethics board offered that Hannah’s protocol would be challenging to approve. All the rep knew of Hannah’s project was that it would be asking questions about sexuality of adults labeled as “intellectually disabled” at a day center in Montreal, Quebec. Taken together, the presumed nature of Hannah’s interlocutors' disabilities and her research topic served as grounds for presumptions of incapacity to consent to research.
Hannah’s reviewers proposed a proxy consent protocol paired with verbal assent (typically used to facilitate research with children) to solve the “problem” of presumed incapacity. However, third-party consent by way of proxy contributes to the infantilization of Hannah’s participants. Instead, in her protocol, Hannah made the case that the presumption of incapacity is itself a source of her participants' vulnerability, rather than an inherent feature of their intellectual disabilities. Presumptions of incapacity contribute to the ongoing exclusion of disabled people from everyday decision-making and research that impacts their daily lives. Mitigating the vulnerability stemming from presumptions of incapacity requires that researchers working with disabled interlocutors assume consent capacity.
Critiques of research ethics boards (e.g., Chin 2013; Bell 2014) suggest that they serve primarily to protect the institution, fail to understand the fluidity of the ethnographic process, and present merely a hurdle to clear before getting on to the “real work” of research. We add that institutional ethics infrastructures, including review boards, are crucial sites to resist ableism and reimagine consent practices. Given the history of non-consensual medical experimentation on and coercion of institutionalized disabled people, it is imperative that research ethics attend to disability/ableism. And yet, informed consent—supposedly central to ethical research relations—can cause harm by reifying ableist notions of capacity while simultaneously purporting to protect participants. How do we reduce, if not eliminate, this harm, especially for those deemed incapable of consent?
Consent-as-method might inform a (more) ethical anti-ableist anthropology. We build on “disability anthropology” as a method for analyzing ableism (Hartblay 2020; Durban 2022), here in institutional ethics structures, while also emphasizing that ableism impacts us whether or not we are disabled (Lewis 2022). “Capacity to consent” is relevant not only to anthropologists of disability; the ableism underlying this concept should concern the discipline at-large, especially across field sites where populations are made and represented as “vulnerable.”
The informed consent paradigm, as it is currently enshrined in institutional research ethics, is not only insufficient but harmful, requiring researchers to enact ableist protocols against our disabled participants and ourselves. Denying the capacity to consent is violence; we must experiment with consent practices that rupture ableist assumptions about the researcher and the researched and their presumed (in)capacities. This does not mean that consent capacity is inherent or given, but rather that it is to be done relationally by building access into research projects from the start. This includes allowing for multimodal communication, involving sensory and artistic forms, as Rebecca-Eli proposed. It also involves reconsidering the consent protocol itself, like Hannah did by using familiar vocabulary, building more time into the consent process, and providing consent forms in plain language or visual formats. We propose that assuming consent capacity is an anti-ableist methodology. Ultimately, this mode of consent requires assuming that capacity is possible when meeting each other’s access needs is foundational to research praxis.
Bell, Kirsten. 2014. “Resisting Commensurability: Against Informed Consent as an Anthropological Virtue.” American Anthropologist 116, no. 3: 1–12.
Durban, Erin L. 2021. “Anthropology and Ableism.” American Anthropologist 124, no. 1: 8–20.
Chin, Elizabeth. 2013. “The Neoliberal Institutional Review Board, or Why Just Fixing the Rules Won’t Help Feminist (Activist)Ethnographers.” In Feminist Activist Ethnography, edited by Christa Craven and Dána-Ain Davis, 186–198. Lanham, Md.: Lexington Books.
Hartblay, Cassandra. 2020. “Disability Expertise: Claiming Disability Anthropology.” Current Anthropology 61, S21: S26–S36.
Neumeier, Shain, and Lydia X. Z. Brown. 2021. “Beyond Diversity and Inclusion: Understanding and Addressing Ableism, Heterosexism, and Transmisia in the Legal Profession.” American Journal of Law & Medicine 47, no. 1: 76–87.
Lewis, Talia A. 2022. "Working Definition of Ableism." Talila A. Lewis, Jan 1.