Care-ful definition of consent

Abstract

This proposal is an attempt to intervene in psychology’s violent past and troubling present by calling for notions of “care-ful” practice, compelling us to recognize and celebrate the permeable, porous, and flexible boundaries between bodies and selves. With this heuristic of care, this article hopes to trouble the separation between rigor and relational responsibility, to trouble objectivism, to oust the illusion of cool rationality, and to offer an affective understanding of consent that refuses to deny sexuality in bodies oppressed with the label of intellectually disabled.

Keywords

critical health psychology disability sexuality stigma theory

It seems clear that the welfare of mentally retarded individuals who lack reproductive autonomy will not be served by treating them as if they were normal and capable of exercising all the rights of normal persons.

Diekema (2003: 25)

Individuals who have severe or profound mental retardation, IQs below 35/40 do show sexual behavior which is mainly self directed but sometimes also directed at other human beings. However, contrary to people assigned to the higher levels of mental retardation they seem to lack the mental equipment for the kind of reciprocity involved in sexual interaction, such as elementary role taking abilities and a clear differentiation between the self and others.

Spiecker and Steutel (2002: 157)

I start with these quotes, without an introduction, to rattle us. Removing would be justifications or lengthy analyses to punctuate the beginning of this conversation with these stark quotes, like sparks from a fire, I hope to distill the language used within knowledge generating institutions to reveal the depth of exclusion and abuse of people labeled as intellectually disabled. Sufficiently distressed, I want to move us beyond naming the hurt that we as psychologists enact when we make bodies into specimens and the hurt we are a witness to move us toward cultivating possibilities.

Psychology is not the only discipline contributing to this conversation I am engaging in about consent, but because of my positionality and because of the societal power granted to psychology, I will focus in on the rhetoric generated by psychology. How is sexual consent operationalized historically, legally, institutionally, and interpersonally in lives labeled as intellectually disabled? What are the implications of this psychological rhetoric? How can we begin to reimagine a more ethical, loving definition of consent—one that refuses to erase bodies and one that refuses to tread the path paved by eugenics? These questions guide both my imaginations and my provocations directed at the discipline of mainstream psychology.

As the quotes underscore, and as the literature I will explore corroborates, sexuality of people oppressed by the label of intellectually disabled has largely been framed in the context of pathology (Friedman et al., 2014). While in the United States and in other countries, sexuality for people oppressed by this label has been elevated as a human right, and the terms of the conversation make sexual intimacy nearly impossible, even criminal. The focal construct that allows for the potential criminalization is the concept of consent. The broad topic of consent is a site of centuries of advocacy where scholars and activists from the margins tirelessly struggled and struggle toward equity and justice (e.g. Pateman, 1980). In this article, I argue that institutionalized consent as operationalized in the lives of those labeled as intellectually disabled requires special consideration because of its uniquely oppressive enactment. I want to extend the conversation to call attention to how differently consent is understood in systems claiming to support people oppressed with the label of intellectually disabled.

Legal consent is established in lives categorized as intellectually disabled by seeking three components. These are as follows: first, demonstration of knowledge related to decision-making, such as the risks and benefits of engaging in a sexual act; second, intelligence or sufficient reason to comprehend the implications of the act; and third, voluntariness (Katalinić et al., 2012). Whether on a legal, institutional, or interpersonal level, the assessment of capacity is named as crucial. Yet, as Lyden (2007) points out, there is “no consensus concerning either the definition of capacity or the standards for its determination” (p. 5). Nonetheless, the expectation of the invisible concept of (in)capacity negates the possibility of consent.

With capacity stitched into the technical understanding of consent, I take on the critical psychological project of illuminating and explaining the twin construct of consent/capacity by tracing it through historical, legal, institutional, and familial frameworks. In tracing consent through the literature, I am committed both to deconstructing consent and to the construction of what Teo (2015) calls a critical psychological counterconcept that “allows for different types of psychologization with differing resisting potentials” (p. 247).

According to philosopher Iris Marion Young, marginalization is the most dangerous form of oppression because when a whole category of people is excluded from participating in social life, it increases the potential of extermination. The critical tone I adopt within this article is, in part, because the abuses inflicted on people labeled as intellectually disabled should be met with outrage and to be heard from the margins perhaps it is best to scream. Also, I adopt this tone because I am aware of psychology’s history of misusing academic work to justify further oppression. I do not want my position, my ethics, and my commitments to be misinterpreted.

Therefore, this critical project is structured in two distinct parts. The first section excavates relevant psychological literature, performing a literature review to simply state what themes texture the psychological landscape at the intersection of intellectual disability, sexuality, and consent. The second section builds toward an ethical conceptualization of consent, which I call, care-ful consent.

Why me, why this, why now

Before entering a brief discussion of history, I would like to honor the call from Leigh Patel (2015) for what she calls answerable research and acknowledge my specific history and my specific relationship to the words I offer. My method though somewhat rebellious builds on foundations laid by feminist, theoretical, critical, and liberation psychologists (e.g. Clegg, 2011; Fine, 2015; Freeman, 2016; Opotow, 1990). I am indebted to the work of many scholars who have sought ethical engagement in knowledge building even though psychologists often “work at a distance from everyday realities in marginalized communities” and are, therefore, not aware of the misrepresentation of these lived realities (Adams et al., 2015: 224). These are conditions that cultivate an environment in danger of committing what Teo (2010) calls “epistemological violence” (p. 295). When Patel (2015) invites researchers to bring their histories, to answer humbling questions—why me, why this, and why now—she is offering an ethical path forward, one that refuses to reinforce the colonial project, and one that is committed to minimizing the incidents of epistemological violence.

My work is personal, etched into my soul, into the most vulnerable parts of who I am. While performing this genealogical excavation on consent/capacity, I am not drawing on anonymous subjects, I am nourished deep in my belly by people I love, who are impacted by the heartbreaking histories I will write, by the legal system that I will describe, and by the institutions that I analyze. Therefore, in this work, these words are tenderly nourished by them as well.

I spent 4 years as a member of a collaborative art intervention seeking to dismantle the violence of sheltered workshops, institutions that segregate and exploit people labeled as intellectually disabled as they are expected to perform rote, repetitive factory-like work for low or no pay. There I was a witness to the dehumanization that psychological literature whittles into academic language, or denies. I was a witness to systemic torture as people I worked with, victims of sexual abuse, were forced to take part in various aversion therapies to stifle any feelings of desire. I was a witness to erasure as all significant decisions related to lives were made by staff, whether about the grocery list or about someone’s ability to engage in friendship with others. I was a witness to pervasive, deep dehumanization. In short, I was a witness to the mechanics of moral exclusion (Opotow, 1990). These experiences have shaped the language I use, awkward as it is. The logic of why I write oppressed by the label of intellectually disabled stems from my experiences of sitting in on professional meetings to be part of generating institutional documentation. In these spaces, only the professionals used the terminology of intellectually disabled or, occasionally, mentally retarded. The people I am honored to consider dear friends, the loves I carry in my soul, never used the labels. There is also a historical reason to my awkward framing of this category. Intellectual disability as a classification was generated by and reified by 19th century superintendents of institutions and through the application of misused mental tests. Intellectual disability is not a single condition but a classification and one that is often used to inflict violence.

My process and intent

To characterize psychological languages of disability, consent, and sexuality, I used a popular database of psychology articles, largely containing literature representing psychology in the United States, and identified available literature relating to the topics of intellectual disability and consent and sexuality. Following this path, I was able to refine the core themes and consider counterconcepts. Not surprisingly, given the marginalization of the topic within the discipline, the psychological literature at the crossroads of these concepts is scarce. Even so, the available literature tells an important story. I found that the empirical research roughly fell into four categories of content: the history of consent, analysis of legal questions, institutionally relevant issues, and perspectives and experiences at the level of the family unit. My analysis of this literature led me to trace the trickling of consent from the macro to the micro—from the historical to the interpersonal. Through them, I do not aim to offer a comprehensive review, rather I hope to sketch the broad features of the discourse within psychology about consent and the category of intellectual disability. These broad strokes are to make explicit historically ingrained assumptions that place groups outside of the moral universe (Opotow, 1990). I hope this exposure renders these collective misunderstandings contestable, allowing us to challenge their power to dehumanize.

Operationalization of consent

Brief historical survey of eugenics and sterilization in the United States

Since time immemorial, the criminal and defective have been the cancer of society, strong, intelligent, useful families are becoming smaller and smaller; while irresponsible, diseased, defective families are becoming larger … To prevent this race suicide we must prevent the socially inadequate persons from propagating their kind, ie. the feebleminded, epileptic, insane, criminal, diseased and others. (Written in a 1934 Law Journal, quoted in, Diekema, 2003: 22)

A consideration of the systemic handling of the concept of consent and capacity related to individuals oppressed with the label of intellectually disabled must begin with a historical conversation. Illuminating this legacy makes it easier to decipher the murmurs of eugenics in the policies and practices of the present. Quotes, like the one above, continue to stretch implicitly into conversations in the present. The quote, far from being sensational at the time, is representative of the rhetoric that surrounded the eugenic project of forced sterilization in the United States (Carey, 2009).

Between the years of 1907, when the first state passed a law allowing and even requiring sterilization for those considered feebleminded, and 1957, over 60,000 people were forcibly sterilized without consent (Katalinić et al., 2012). Germany and England are most often associated with the eugenic project, but the movement was planted and cultivated in American soil. In fact, American foundations invested funds in Hitler’s efforts, eager to use that political climate as a laboratory for the US eugenic project. Shockingly, The Rockefeller Foundation was involved in the funding of the German eugenics program—including the Kaiser Wilhelm Institute for Anthropology, Human Genetics, and Eugenics where Josef Mengele worked prior to Auschwitz (Black, 2003).

In line with this campaign to promote a particular form of genetic purity, researchers devised new assessments and categories, carving out new ways of classifying people. Psychology was an essential and powerful player in this eugenic project.¹ For instance, psychology’s role within eugenics can be inspected through a brief consideration of an essential psychological concept, the normal distribution. The normal distribution as a statistical visualization, omnipresent in psychological research today as an organizing tool for populations, made an appearance in psychology at the height of the eugenics movement (Hacking, 1995). Rounding up the very tail of the normal distribution of population level intelligence quotient (IQ) scores, psychologists classified people as feebleminded, imbeciles, idiots, and institutionalized and prevented them from procreating.

Once psychologists defined people’s location on the normal curve, and policies impacting individuals were easily justified by these newly crafted categories. As Judge Holmes’ famous closing statement in the landmark supreme court case Buck v Bell implies, people oppressed with the category of imbeciles, justified by their location on the normal curve, could only become criminals or starve; therefore, it was society’s obligation to prevent these people from “continuing their kind.” This statement, one that officially made it legal to forcibly sterilize those considered feebleminded, ended brutally and memorably with “three generations of imbeciles are enough” (Diekema, 2003).

The forced sterilizations and inhumane institutionalizations inflicted on people oppressed based on cognitive judgments were an extension of a larger White supremacist colonial project that was designed to maintain the purity, superiority, and health of the default, that is White, race. Tracing the work of prominent and revered psychologists of the 1960s and 1970s, Winston (1998) demonstrates how psychologists directly participated to promote White supremacy and preserve segregation. Critical histories like this bring to the surface the otherwise concealed intentions promoted by scientific literature. In line to Winston’s findings, reviewing scholarship published from 1937 to 2003 related to “mental retardation,” Eleson (2006) found most claims put forth by the articles were unsupported by even basic empirical attempts and were based on unquestioned biases. Despite the methodological issues, these studies continue to have serious consequences on lives, as is exemplified by the continued use of such abusive practices as aversion therapy for behavioral modification (Ter Mors et al., 2012). As I introduce the literature I analyzed as it speaks to legal, institutional, and familial contexts, I am building conceptually upon these histories to underscore the presence of the past in psychology’s conceptualization of the category of intellectual disability.

My intention with this brief historical survey is to raise a few provocative discussions regarding consent so that these vibrations can be more easily perceived in the present. Today, the institutionalization, segregation, exploitation, and medical torture of people oppressed with the label of intellectually disabled continues. Sterilization too continues (Tilley et al., 2016). To involuntarily sterilize anyone today it must be justified on the basis of it being in the “best interest” of the individual (Diekema, 2003: 22). In the literature, if someone is perceived to be vulnerable to exploitation, then involuntary sterilization may be justified. Given that consent to sex is perceived as impossible for people whose capacity is denied and who are characterized as chronically vulnerable, these terms ensure the human rights violations of the past, like forceful sterilization and institutionalization, can be justified in the present and into the future. The language may have changed, but the outcome is the same, and it is supported by legal and legislative frameworks.

Consent and the law

It must be mentioned that these persons before entering marriage must be provided with marital counseling regarding duties and responsibilities sexual intercourse contraception and possible sterilization before obtaining approval to get married. (Katalinić et al., 2012: 41)

With the history of eugenics salient, not as something in the past but as the container that holds policies in the present, in this section, I explore the legal operationalization of consent as it textures the discourse within psychological literature. As the quote notes, some nations (e.g. Croatia) continue to require counseling and even potential sterilization before people oppressed with the label of intellectually disabled are allowed to marry. In the United States, since 2008, the American Association on Intellectual and Developmental Disabilities (AAIDD) offers an explicit policy that insists that sexuality is an inherent human right that must be supported. Each state, however, interprets this right in very different ways. Such differences exist across the Atlantic as well, with some variation. Regardless of location, these western legal frameworks uphold individual responsibility and accountability denying our relational existence and failing to, in the words of Judith Butler (2006), “do justice to passion, and grief, and rage, all of which tear us from ourselves, bind us to others, transport us, undo us …” (p. 21). In other words, the same insistence on independence that is found in scientific wisdom and paints lives as separate rather than interdependent on one another haunts the legal realm.²

Legal discourse is encountered by anyone oppressed by the label of intellectually disabled seeking to engage in sexual activity. Scaffolding the interaction between person and legal body are philosophical assumptions that dictate language, perceptions, and what is considered just. Ethicists Spiecker and Steutel (2002) reveal some of these implied assumptions asking “Is sex between people with mental retardation morally permissible and, if at all, under what conditions?” (p. 155). Individual consent, Spiecker and Steutel pose, is not possible because of the very definition of the category, which is that people oppressed with the label of intellectually disabled do not have the reason to fully know what contract they are entering into. People with “mental retardation could be defined as human beings who are lacking to a certain extent the capacities of practical reasoning implied in having the status of an adult” (p. 159). Spiecker and Steutel argue that it should follow that people, who they have likened to children, require particular forms of “paternalistic guidance and moral supervision” (p. 160). Their recommendation is that people do have a right to engage in sexual activity but only under supervision.

While I do not wish to deny that there is variation among philosophers’ and ethicists’ perspectives, I offer Spiecker and Steutel’s (2002) view because it is useful to hear the explicitly exclusionary terminology that lurks behind legal perspectives. In New York State, for example, sexual consent is based on whether persons can understand the social mores of the sexual act and demonstrate their understanding, before they engage, whether their act might be immoral (Lyden, 2007). Even with cognitive impairment, Lyden notes, a person may be shown to have the capacity to consent to sex. This is also the case if one has a legal guardian, a dominant system in the United States, but these individuals must also be assessed by a licensed health care professional to evaluate whether they can be considered to have sexual consent capacity. Legal power, clearly, is heavily weighted on the side of professionals and non-labeled bodies. Conducting a series of conversations with self-advocates, Friedman et al. (2014) found that many states’ guardianship laws are structured in such a way to sometimes prevent individuals from practicing sexual advocacy or exercising their sexual freedom. Guardianship models allow the non-labeled individual to structure the residential, recreational, and vocational experience for the labeled person in such a manner that opportunities to cultivate connections are minimized or eliminated. Stated another way, the guardianship models are likely to absorb the individual under the power of the non-labeled person allotted the role of guardian.

These guardianship models are more common in American states than Western European countries where the “best interest” determination method is used to establish consent and capacity (Dunn et al., 2007). In the case of presumed incapacity in England, where sexual activity with a “defective” was against the law until 2003, a substitute decision-maker is assigned to consider what is in the person’s best interest (Dunn et al., 2007). This best interest determination is intended to be removed, impartial, and reflective rather than emotive and interrelational. The authors caution that this approach of best interest is “potentially incompatible with the situated and embodied nature of the relationships within which the best decision could be made” (Dunn et al., 2007: 130). Following a set policy to determine what is objectively considered, the “best interest” of the individual does not recognize the blurry, ambiguous nature of encounters between people, including between caretaker and the one cared for. Still, it is more ethical, the authors note, than the guardianship model that relegates the decision-making power to a legal guardian as is common in the States. The best interest model does not fully evacuate the individual from the decision-making process, while the guardianship model can legally do so.

Institutions and consent

We are meeting today because you were referred by staff at your residence. You were referred because staff believe that you are interested in having a sexual relationship. The reason for our meeting is to find out whether or not you have the capacity to have sexual relations with another person … The Committee listens to the report and will make a decision about whether you understand enough to have a sexual relationship. The committee treats the information as confidential; that is, they don’t share it with others except for the information that your staff needs to know. Then, you will be told the decision. (Lyden, 2007: 5)

However, inadequate for capturing life as lived by people oppressed by the label of intellectually disabled, the legal cloak once cast impacts other realms, infiltrating institutions and families.

I include this excerpt above as an illustration of the institutionalized narrative people oppressed with the label of intellectually disabled encounter. It is unclear how many institutions utilize this script. Still, for those not so labeled, such a conversation taking place before an act of intimacy would be unimaginable. An evaluation by a committee comprised a licensed psychologist, two licensed social workers, an agency attorney, and a residential administrator follows this script. The committee’s deliberation is recommended as a precaution an agency must take to diffuse liability and to demonstrate commitment to objectivity. In addition to the face to face meeting initiated by that sample script above, the committee charged with the oversight of people labeled as intellectually disabled must review records and talk to selected people, such as parents or guardians. Given the unclear legal expectations, and lack of defined terms, institutions engage in oversight that is orchestrated to avoid an imagined legal conflict and the possibility of being implicated in abuse.

There are reasons for institutions to be concerned about being implicated for abuse given the known history of violence within asylums. Interestingly and disturbingly, the literature on consent and sexuality does not reference the history of institutions themselves, such infamous places like Willowbrook in New York or Fairview in Oregon. Given this history, the necessity for today’s institutional scripts, like the one provided by Lyden (2007), becomes more clear. However, the ahistorical nature of these institutional documents is disconcerting. The missing reference to the horrors committed within institutions staffed by psychologists speaks volumes of psychology’s disassociation with its complicity in the eugenic project.

Medical documentation is one of the principal ways that consent is institutionalized. Today’s institutional interactions between professionals and individuals oppressed with the label of intellectually disabled rely on a medicalized, fixed interpretation of the individual based on past and current professional perspectives. Benaroyo and Widdershoven (2004) critique the language of institutions and medical records, noting that they distance the caretaker from their own feelings and values. Similarly, the content of these files is made inaccessible to the individual the files claim to describe. This professionalized language is significant when considering whether one is allowed to engage in sexual acts or whether they will be involuntarily sterilized for being deemed too vulnerable or otherwise “requiring” this level of intervention. Lived experience, emotions, desires, pleasure, and pain are all stifled in this conversation about consent within the language of liability and professional evaluation.

Consent and capacity with the family

These forms of institutional violence can also travel into the intimate space of the family. Activist parents who refused to accept the violence of institutionalization initiated deinstitutionalization in the 1960s advocating against the large asylums that imprisoned their children often shortly after birth till death. Parents and researchers themselves, Rapp and Ginsburg (2011), celebrate the fact that children today “belong unambiguously to their families, communities, and schools” (p. 401) rather than to institutions. I want to complicate the parent–child relationship and theorize how this embeddedness within structures may impact considerations of capacity and consent. In order to better respond to the institutions their children interact with, parents (mostly moms) shift their professional identities to help their children (Rapp and Ginsburg, 2011), even changing careers to become reading specialists, speech pathologists, and researchers. Rapp and Ginsburg (2011) argue that this process generates new forms of parenting and personhood and reimagines family life. This reimagined family life creates a hybrid parental figure, one who is tending to a child but also managing a professional identity directly related to their child.

Considering the oppressive ideologies that are upheld by institutions that directly interact with these families and considering the alienating impact of professionalized language, I wonder whether the professionalization of the family is unintentionally siphoning these systemic values into the realm of the interpersonal. A survey from 2011 found that 71 percent of adults oppressed with the label of intellectually disabled lived with their families with family members being the primary caregivers (Williamson and Perkins, 2014), in their role as caregivers receiving support and training from the state. Families might be recruited to take on the heavy lifting of neoliberalism rather than imagining possibilities beyond the limiting systems. Obliging families into the position of adopting the institutional perspective for survival renders the institution and systems themselves more relevant and more fixed, unintentionally reinforcing the same problematic systems that forced this professionalization of familial relations.

Disrupting institutional alienation through familial relationships

Despite the increased professionalization of the family (Rapp and Ginsburg, 2011), families can also play a beneficial role in responding to the effects of moral exclusion and expanding the boundaries of the moral universe by offering a loving translation that can only come from a deeply relational connection. An example of this beneficial role comes from literature exploring relationships between parents and children on the autistic spectrum. Hart (2014) describes these parents’ translation of their child’s behavior and expressions as “radical translation” (p. 286), as it accesses an inner world that is deemed by uninformed observers as radically unknown. Similar to Rouse’s (2004) embodiment by proxy, radical translation blurs the boundaries between parent and child in an effort to make comprehensible to the world each other’s values and identities. These parent–child relationships make clear that to be alive is to be interrelational. Capacity and consent should not be considered through the historic and institutional psychological patterns I described above; rather, these possibilities require an ontological shift to the radically relational. Radical translation is a helpful construct as I move toward offering a care-ful definition of consent, but it remains a precarious space that can be a site of not only possibilities but also capture. The question that lingers, and is not simply answered, is how this radical translation can occur with chosen others.

Proposition for care-ful consent: new directions for future research

Let’s face it. We’re undone by each other. And if we’re not. We’re missing something. (Butler, 2006: 23)

Beginning with historical documents, I amplified the murmurs of eugenic era policies in the present. Keeping history illuminated, the legal language appears to struggle with ill-defined terms while upholding the myth of the autonomous individual. Institutions grapple with the ambiguous legal framework and enact policies that mitigate the potential of institutional liability. Situated within political contexts that devalue and disinvest from support, families are forced to become professionalized, potentially reproducing containment. My engagement with current definitions upheld by recently published research was not intended to disparage or point fingers. Instead, I hope this project of socio-historical critique only makes future research focused on constructing possibilities and envisioning an ethical and inclusive definition of consent more feasible. In this spirit, I offer new directions for future research by offering a preliminary care-ful definition of consent, one that refuses to erase and silence, a definition that I hope makes the aliveness of bodies impossible to ignore. I intend to return consent to the flesh, to the body, in this preliminary definition I offer. I do this with the aim of ensuring no bodies can be denied the right to intimacy, the right to touch.

Coming in contact with lived experience

Consent, operationalized historically, legally, and institutionally, is part of how moral exclusion (Opotow, 1990) is enforced for people oppressed by the label of intellectually disabled (Ilyes, 2016) and is involved in the mechanics institutions use to protect themselves. Perhaps, one reason why the operationalization of consent is so thoroughly oppressive is because the psychological literature influencing it has rarely sought direct input from those most intimate with the construct. This is not simply an epistemic oversight, but a moral and ethical act of dehumanization and fundamentally flawed research. Even a brief ethnographic experience in close contact with people oppressed with the label of intellectually disabled can reorient how lives and relationships are negotiated, how bodies are enmeshed, and how consent is framed (Dunn et al., 2007). Psychology, generally composed of knowledge that upholds the interests of those in power (Adams et al., 2015), has failed to sufficiently recognize this contact between people, instead reinforcing the myth of the autonomous individual and pathologizing vulnerability.

Contact inspires us to “bear witness to our own insufficiency” as Kristine Chew (2013) put it so beautifully to recognize the inscrutability of the otherness that we try to understand. Contact with the perspectives of people who are oppressed by the label of intellectually disabled also counteracts the disempowering discourse of consent and capacity within a historical, legal, and institutional framework. Meaningful research about consent without contact is not possible. Yet, the research relying on lived experiences of people oppressed with the label of intellectually disabled is limited but vital. Friedman et al. (2014) invited individuals oppressed with the label of intellectually disabled to discuss their experiences advocating for sexual rights. In these interviews, the participants point to the inaccessibility of clinic locations, legal issues pertaining to guardianship, infantilization, and disrespectful professionals as systemic barriers to their rights, issues that are overshadowed in mainstream psychological literature with concerns of vulnerability or deviance. In a telling quote, one of those interviewed defined sexual advocacy as meaning “helping those I love understand this idea” (Friedman et al., 2014: 522). The only time the interviewees brought up the issue of consent was with doctors neglecting to get their consent before they shared their information with others. These reports signal the need to address real institutional oppression rather than imagine potential³ vulnerabilities from imagined perpetrators.

To feel competent is to belong

One framing of competence/capacity hinges upon feeling as though one belongs. Difference becomes incompetence when the environment is inhospitable, when a person is made to feel as though they do not belong, when they are morally excluded. When a person is under pressure, when perhaps they experience the intrusion of the intimate and private being scrutinized in a committee of distant professionals in a language that is alien, the feeling of belonging, the ability to orient one’s self in an environment becomes threatened. Institutions of support intended to empower instead invent incompetence through a restrictive, inaccessible, alienating environment. One may feel that they do not belong and be perceived as (in)competent. Philosophers Benaroyo and Widdershoven (2004) put forth a hermeneutic understanding of competence that is not only simply the ability to reason but also rather the practical ability to navigate one’s environment, therefore to feel as though one belongs. Under the current system of thinking about capacity, of considering the ability to consent, the environment—legal, institutional, and interpersonal—needs to be scrutinized for potentially being the force in disabling and incapacitating individuals, giving birth to the cyclical process of inventing and reinforcing incompetence.

To reconsider consent, while questioning the impact of a disabling environment, I also want to explore how we understanding relationships between bodies identifying the role of affect. Psychoanalyst Silverman (2015) writing about her therapeutic relationship to a client describes boundaries between them becoming thin and porous in time. In these relationships, people are thinking together with a generative reflective space between the two minds rather than overpowering either identity. In this relational exchange, in which experiences and context are moving together, an interpersonal contact zone is made possible (Pratt, 1991). Pratt (1991) defines a contact zone as a space where perspectives collide and are negotiated. Without allowing this contact zone to be generated, the evaluation of consent or capacity relies on colonizing the world of the other by the world of the dominant.

Consent and competence as fundamentally affective

Consent must be understood as fundamentally affective if it is to minimize the risk of absorbing the other, but current cognitivist views of competence do not allow room for affect (Charland, 1998). Evacuating affect, therefore, makes the creation of a contact zone less likely. Affect rooted in one’s life and one’s body, from a hermeneutic perspective, engages more of one’s life history, seriously considers feelings, prioritizes precarities, and embodiments (Cheng, 2016). It at once recognizes the corporeal nature of relationality, allowing for a recognition of pleasure and pain, while also making boundaries around bodies visible yet simultaneously permeable.

Introducing affect reimagines as relational the framework under which consent is considered, making visible the actual, yearning bodies. The psychological, legal, and institutional treatment of consent has rendered the bodies in question into medicalized objects. Affect renders the bodies relevant, allowing them to hold desire or ache from a wound, or both. Nel Noddings (1988) calls this an ethic of care (p. 219). Unlike traditional forms of ethics that assume obligation behind action, an ethic of care prioritizes love for the other, in which the carer is energized as much as the one who is the recipient of the care, “the carer feels with the other and acts on his behalf” (Noddings, 1988: 220). The etymology of consent is “to feel together” (Figure 1). Affect has been erased in the institutional operationalization of consent as a mechanics of moral exclusion (Opotow, 1990); evacuating affect may render bodies disposable and not deserving of rights by increasing the potential of dehumanization. Consent understood through the ethic of care returns affect, and with that, returns pleasure and pain, honors connections, and makes the imperceptible perceptible.

Figure 1.

Diagram depicting etymology of consent.

Feminist theorists, like Nancy Fraser and Linda Gordon (1994), have long asserted that our fundamental dependency on each other has been denied by the patriarchal normalization of independence. Despite this, our reliance on care from others is an “inescapable feature of the human condition” (Fraser and Gordon, 1994: 24). Understanding consent and capacity within this ethic of care is essential for minimizing the violence of misrepresentation, mistranslation, and erasure.

Translation, according to literary theorist Walter Benjamin (2012), is not intended to replicate the meaning of the original; rather, it must “lovingly and in detail” integrate the original’s sense resulting in both the original and the translation combining into a greater language. An ethic of care renders a more loving translation of human desire related to consent, one that is fundamentally affective and relational. Consent framed through an ethic of care dissolves the line that has been drawn by psychology’s assumption of the autonomous individual, dissolves the line that has been reinforced by legal and institutional objectification of bodies oppressed by the label of intellectually disabled. A care-ful definition of consent, unhinged from the ill-defined construct of capacity, begins to address moral exclusion by acknowledging bodies oppressed by the label of intellectually disabled as full of feeling, deserving of fairness, inclusion, and love.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

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