Rethinking systemic ableism: A response to Zagouras, Ellick, and Aulisio

Abstract

Introduction:

This article is a response to Zagouras, Ellick, and Aulisio who presented a case study justifying the questioning of the capacity and autonomy of a young woman with a physical disability who was pregnant and facing coercive pressure to terminate.

Case description:

Julia is described as a 26-year-old woman with a neurological disability that requires her to receive assistance with activities of daily living. She was described as living with her parents who provided her with personal care assistance. Julia became pregnant and her parents wished her to terminate because they did not want to care for her child in addition to her. In fact, Julia’s parents threatened her with institutionalization if she did not elect to terminate the pregnancy. Her health care team questioned her decision-making capacity based on her alleged “mental age” and experiences of being sheltered and excluded. The health care team used directive tactics to convince Julia to terminate the pregnancy, which describe as both an ethical and feminist intervention.

Discussion:

The current authors take issue with the case analysis provided by and argue that they neglected to account for numerous instances of systemic ableism that adversely affected Julia, demonstrated prejudicial and judgmental attitudes toward pregnancy and disability, inappropriately questioned her decision-making capacity by infantilizing her, misconstrued the feminist concept of relational autonomy, and colluded with coercive interference from family members. This is a classic example of discriminatory and culturally incompetent reproductive health care for a disabled woman.

In response to Zagouras, Ellick, and Aulisio’s article entitled, “Rethinking individual autonomy in medical decision-making for young adults reliant on caregiver support: A case report and analysis,” we argue that systemic ableism was an underlying and unaddressed factor in their analysis of decision-making capacity of a physically disabled young adult pregnant patient.¹ Women with disabilities face significant discrimination, including by the health care system. In a recent systematic review, Heideveld-Gerritsen and colleagues found that research indicates that health care providers lack of knowledge of the relationship between physical disability and pregnancy, health care providers are often unwilling to assist women with physical disabilities with disability-related care, and women with physical disabilities feel dehumanized through the actions of health care providers.²

Indeed, numerous attitudinal barriers interfere with disabled women pursuing motherhood. For example, they are often stereotyped as dependent, infantilized, and portrayed as “selfish” for having children. Disabled women are perceived as being incapable of being adequate caregivers for their children, especially if they require assistance from others.³ Societal perceptions of women with disabilities judge them as inadequate nurturers and less capable of stereotypical responsibilities associated with child rearing, such as housekeeping.⁴ Disabled women and their children have even been considered a burden on society.^5,6 Women with disabilities are encouraged not to reproduce due to the risk of passing on disabilities with a genetic component.^5,7 These attitudes are pervasive and often lead to pressure on disabled women not to pursue parenting, to undergo sterilization, or abort pregnancies, as in the case of Julia.^7-9

Zagouras et al. present the case of Julia as a 26-year-old woman with a congenital neurological disability. The authors reported she required physical assistance with major activities of daily living, which were provided by her parents with whom she resided. Her cognitive functioning was described as unaffected by her disability. Zagouras et al. stated that Julia and her parents presented for health care because Julia was several months pregnant and had just disclosed it to her parents. The authors note “Julia was excited about the pregnancy and wanted to continue it,” but “her parents presented her with an ultimatum: if she did not terminate the pregnancy, she would have to move to a state-run assisted living facility for adults with disabilities for the duration of the pregnancy and no longer be cared for in their home afterwards”.¹ The father of the fetus was described as “having a history of violence and possible substance abuse” and being unavailable “to contribute to childcare”.¹

Zagouras et al. go on to describe the role of the care team in questioning Julia’s decision-making capacity based on the “context” of the case and “risk-related” standards. They repeatedly challenged her to “think more critically about her situation” by posing questions about how she would support herself and care for a child without her parents’ support. The authors indicate that this intervention by her care team led Julia to decide to terminate her pregnancy. The authors justify this approach by arguing that Julia’s autonomy extended to her family because her decision had “significant repercussions” for them.¹ Zagouras et al. attempt to frame this as a feminist take on relational autonomy.

The current authors fervently disagree with the analysis of Julia’s case provided by Zagouras et al. Instead, we assert that Julia’s capacity was inappropriately questioned, she was infantilized due to her status as a disabled woman, her care team coerced her in collusion with her parents, and the feminist application of relational autonomy was misused to justify unethical care.

Capacity

The current authors have significant concerns about many of the arguments made by Zagouras et al. regarding capacity. Zagouras et al. are correct that capacity is always decision and context-specific and that decision-making capacity should not be solely based on whether their decision is considered ill-advised by their care team.¹ We agree with these points but note that capacity is also time-specific, which can fluctuate over time. It is never clear in the article that Julia cannot comprehend the consequences of her actions. Instead, it appears she believed her parents would change their minds and agree to care for her even if she continued the pregnancy. The article describes several conversations with Julia that reinforced that her parents were serious about their ultimatum that she would be institutionalized if she chose to continue the pregnancy. Ultimately, the article states Julia elected to acquiesce to her parents’ ultimatum, which was undoubtedly bolstered by the pressure applied from her health care team and agreed to terminate her pregnancy. This fact alone indicates that she did have the capacity to understand the consequences of her decisions and decided based squarely on said consequences.

Although a judgment of health care decision-making capacity cannot be informed by neuroscience alone, especially utilizing norms of nondisabled people, Zagouras et al. explain their reasoning that Julia’s brain development is more like an adolescent than the 26-year-old woman she is. They provide no scientific explanation and only attribute her lack of social opportunities, almost certainly related to exclusion due to a lack of disability accessibility, as the cause of her supposed immaturity. Conveniently, she is somehow capable of making decisions about her medical care, but those same boundaries of competence do not carry over to parenting capacity.

Importantly, Zagouras et al. omitted a discussion about supported decision-making, a practice recommended by the World Health Organization and increasingly favored in the United States.^10,11 In fact, most disabled people have the capacity to make informed decisions.^10,11 Notably, in the limited instances involving compulsory sterilization of disabled people who are found to lack legal capacity, the American College of Obstetrics and Gynecologists states that decisions must be based on the best interests of the individual, while, at the same time, preserving her autonomy to the maximum extent possible.¹² Although Julia’s case involved coerced abortion rather than forced sterilization, the outcome is essentially the same—she was denied reproductive freedom based on others’ perceptions of her best interests. Indeed, reducing “burden” on caregivers is not equivalent to the best interest of the person with a disability. People with disabilities, not their caregivers, are the health care provider’s patients. As such, they deserve the same care and respect as patients without disabilities.

Infantilization

Moreover, Zagouras et al. assert that Julia is an adolescent and that the “adolescent brain differs in significant ways from the adult’s that make adolescents more prone to poor decision-making and impulsive behaviors”.¹ However, Julia is a 26-year-old woman. Although definitions of adolescence have expanded in many fields to include people in their early 20 s, especially males, even the most liberal definitions of adolescence would not classify Julia as such.¹³ Presenting Julia as younger than she is and refusing to acknowledge her womanhood contributes to her infantilization. Zagouras et al. point out that in some instances, adolescents are legally able to make medical determinations about such issues such as pregnancy termination without parental consent and explicitly mentioned that this is to protect them from parental retaliation.¹ However, it was never mentioned that Julia is in the exact situation of facing parental retaliation for a decision about her pregnancy. In fact, her parents had reportedly threatened to place her in an institution and not provide her further care if she continued with the pregnancy. Zagouras et al. consistently hinge their comparisons to adolescent development based on a false equivalence of Julia’s chronological age with a seemingly ambiguous social age. Mental age theory and comparable functional labels are ableist, dehumanizing, not backed by science, and abandoned by most researchers decades ago.¹⁴ The authors never consider that Julia is actually a biological adult and that her expressed desire to have a child is actually quite developmentally appropriate. Instead, such desires are described as an “adolescent-like preoccupation with fitting in with her friends who were starting families”.¹

Zagouras et al. make multiple references to Julia’s “magical thinking”.¹ From a psychological perspective, is the attribution of causal effects to actual real events by a thought or action that is unconnected to the events.¹⁵ Magical thinking may also be used to describe related phenomena typically of a psychotic nature.¹⁶ We consider Julia’s thought process as explained by Zagouras et al. as wishful thinking—she is described as hoping her baby’s father would become involved and that her parents would agree to assist in continuing to care for her. The health care team’s decision to refer to her hopefulness as “magical thinking” contributes to her overall infantilization and pathologizing of behavior that again, is quite common and arguably developmentally appropriate. To be sure, it is not grounds for overriding her right to bodily autonomy.

Another issue mentioned in the article is Julia’s social experience of being excluded, sheltered, and immature.¹ The authors state that Julia’s disability excluded her, but, in fact, only other people and the systems they build can exclude a person with a disability. It is not described exactly how Julia was excluded, but if it was due to inaccessibility or social ostracism related to her disability, those are both forms of ableism. Ableism is discrimination and prejudice based on disability. Again, it is not Julia’s disability excluding her but her environment and social surroundings. Zagouras et al. describe Julia as “immature” and “sheltered,” terms that are relatively subjective. The authors do not provide any additional information about these issues. Julia is described as having the maturity of a 14-year-old, but it is entirely unclear who made that determination and based on what information. If she was indeed “sheltered,” the alleged immaturity might be related to exclusion due to ableism, lack of access to resources, or perhaps related to her parents’ approach to raising her. In any case, it is highly unlikely that such weight would be placed on the subjective determinations of being “sheltered” and “immature” to establish grounds for incapacity to decide whether to terminate a pregnancy if Julia were not disabled. Many nondisabled people are “sheltered” and “immature;” their capacity to make decisions about their own bodies would never be questioned.

Coercion

Further, recall that Beauchamp and Childress argue there are two “threshold elements” of informed consent that must be obtained if a care team is to respect a patient’s autonomy: competence and voluntariness.¹⁷ Zagouras et al. devote considerable discussion to Julia’s competence to make an autonomous reproductive choice,¹ but seem to almost neglect entirely the other, perhaps even more crucial, threshold element: voluntariness. Indeed, for a decision to be considered voluntary, according to the standard view of informed consent, it must be made without interference from others in the form of coercion or manipulation. We find it puzzling that the care team did not immediately recognize the threats of abandonment being made by Julia’s parents for precisely what they were: overt coercion. Perhaps Zagouras et al. failed to recognize this textbook case of coercive interference with their adult patient’s informed choice because of their own ableist biases.

The authors mention the importance of protection “against paternalistic behavior on the part of providers” and admit “significant bias can still exist in assessments of “reasonable” decisions in a health care setting, particularly in cases of reproductive decision-making”.¹ However, there is no exploration of the possibility of bias among Julia’s health care team. It is not mentioned whether there were any members of the health care team who were disabled themselves or if the team ever sought any type of ethics consultation or disability parenting education. A clear bias appears to exist in the statement about Julia’s “unwillingness to consider adoption, an ultimately altruistic act”.¹ Assuming that it would be “an ultimately altruistic act” for Julia to create an adoption plan for her future child because of her disability directly plays into the stereotype that disabled people are incapable of raising children and selfish for wanting to do so.

Policy issues

Furthermore, from a disability policy perspective, several systemic issues went unaddressed in this case. First, it is unclear what other options for daily assistance or activities of daily living could be available to Julia besides her family serving as her caregivers. It is important to understand that because of a lack of social support systems in place, many families end up serving as unpaid caregivers instead of people with disabilities having access to employ and select their own personal care assistants (PCAs). Individuals eligible for Medicaid can receive assistance with PCAs, but the capacity for these home and community-based services varies significantly state to state.¹⁸ Disabled people are still often relegated to living in nursing homes or other congregate or institutional settings because adequate home and home community-based services are unavailable. The article never mentions whether any alternative means for receiving care or possible independent living were ever explored with or on behalf of Julia. Instead, the coercive threats of abandonment made by her parents were taken to be static facts of the case that Julia had to “appreciate” so as to not be characterized as childlike in her decisional capacity.

Unfortunately, Zagouras et al. failed to discuss any other possibilities for Julia and her desire to become a mother. Notably, there are no indications from the authors that they are aware of the prevalence of mothers with disabilities and the fact that disabled women can and do effectively parent children.¹⁹ Instead, they frame it as inevitably impossible for both Julia and her family. All the trusted adults in her life, including her parents and her health care team, believed that she should terminate her pregnancy, and so ultimately, she did.

Relational autonomy

Finally, we find it even more puzzling that Zagouras et al. refer to Donchin’s feminist conception of relational autonomy to argue that Julia’s decision to carry her pregnancy to term would have burdened her family, thus justifying giving her parents’ wishes priority over hers.²⁰ In our view, this is a startling misreading and misapplication of the literature on relational autonomy. Zagouras et al. seem to be arguing that we ought to understand Julia’s autonomy as almost uniquely relational because of her atypical dependence on her parents for material care: “The interwoven nature of her life with the lives of her parents and their role as caretakers made it necessary to adopt a relational model of autonomy when considering the consequences of Julia’s decision”.¹ However, Donchin’s insight is not that the autonomy of some patients is relational because of particularly profound dependency relationships that ought to constrain individual choice.²⁰ Instead, Donchin and other feminst scholars argue that we all are inevitably engaged in relationships of interdependency that confer upon us autonomy to a greater or lesser degree.^19,21 Autonomy is never something an individual has (or not). It is something that is conferred and recognized (or not) by the sorts of relationships we build with each other.²⁰ In this reading, the relationships we all have with other individuals—or even with institutional structures themselves—construct our capacity for autonomous choice. Characterizing Julia as something of a special case and having relational autonomy because of her dependency on her parents entirely misses the point of this theoretical intervention.

In fact, Jackie Leach Scully argues that the experiences of disability can underscore the relational features of autonomy in ways that are informative for bioethics as a whole: “Embodiment and interdependence are realities for everyone, all the time. In a relational view of autonomy, selfdetermination can never be entirely down to the self because it is constituted in relation (negotiation, compromise) with others. Under conditions of impairment, however, these universal features are experienced in unfamiliar ways, and they suddenly become more visible”.²² If the care team took the lessons of relational autonomy in this case seriously, they would not emphasize how Julia’s dependence on her parents lends some sort of legitimacy to their interference with her reproductive decision-making. Rather, the care team would have tried to help Julia create and support relationships that foster and recognize her autonomy. That is, they would seek creative ways for Julia to exercise her autonomy by making choices according to her values in the context of her relationships—including the choice to become a parent if this is what she wants.

This view that Julia’s autonomous decision-making ought to defer to her parents’ wishes operates under several mistaken assumptions. The first assumption is that Julia has nothing to contribute to parenting her child because of her physical disability. This is an unfair stereotype that is often applied to disabled mothers, sometimes resulting in the removal of their children from their custody.²³ Parenting is far more complex than a series of physical care tasks and involves nurturing and other skills that one could argue are equally important as physical ability. The second assumption is that the only possible caregivers to attend to Julia’s needs are her parents. As noted above, no other alternatives were explored. The third assumption is that taking Julia’s interdependence with others into consideration is by itself enough to make the analysis “feminist” It is unclear how this perspective is feminist in that the same argument is often made that a woman’s choice to have an abortion impacts other people, such as the father of the fetus, and so she should not be the sole authority over her reproductive processes. As such, it could be argued that this reasoning is profoundly anti-feminist in as far as it justifies interference from others in a women’s decision to have an abortion or not. This supposed application of feminist theory objectifies Julia as nothing more than a vessel carrying a burden to her family. While their characterization is not aligned with a truly feminist approach, a disability rights framing would be more appropriate. Disability rights hold interdependence up as the ideal and do not strive for independence.²⁴ Autonomy is not the same as independence and has to do with exerting control over choices in one’s life, rather than performing all acts independently. It is never clear in this article that Julia aspires to physical independence but rather wants to make an autonomous choice to become a mother in the context of her interdependence on other people.

Conclusion

The case of Julia as described by Zagouras et al. shares many commonalities with the stories of other disabled women. Disabled women are at greater risk of stressful life events during their pregnancy compared with nondisabled peers.²⁵ They also experience higher rates of physical abuse from a current or former partner during their pregnancy and receive less social support following delivery.²⁶ Disabled women are more likely to delay prenatal care until after the first trimester and to report inadequate prenatal care, which could, in part, be attributed to negative experiences with their health care providers.²⁵ Health care professionals often lack knowledge about their disabilities and may possess negative stereotypes about the sexuality of women with disabilities, including that they are incapable of motherhood.²⁶ Julia’s case mirrors the experiences of many disabled women who become pregnant within an ableist health care system that continues to fail them in providing equitable care. By the account of Zagouras et al., the treatment provided by the health care team was egregiously unethical with its failure to recognize and mitigate coercive interference in this young woman’s informed consent process, driven by the care team’s complete lack of what MacKenzie and Scully refer to as “moral imagination” when it comes to the possibilities for a life well lived with disability.²⁷

In conclusion, we believe Zagouras et al. fell prey to the typical stereotypes that impede culturally competent health care provision for women with disabilities. Prospective parents with disabilities consistently experience judgmental attitudes and questioning of their decisions to pursue parenting, leading to adverse experiences accessing health care.²⁸ Like so many other disabled women, Julia, was stereotyped as an incapable caregiver and an unfit mother. Her physical disability that requires assistance with activities of daily living was used to render her infantilized and allegedly incompetent, thus obscuring the coercive pressure she was under from her parents. Despite the care team’s apparent awareness that their duty was to act in accordance with respect for Julia’s autonomy, they appear to have colluded with her parents who threatened Julia with retaliatory institutionalization unless she terminated the pregnancy. The health care team’s strategy appears to have been wholly effective at executing her parents’ wishes, not Julia’s. Julia very well may have decided that termination of her pregnancy was the best option for her. Her ultimate choice is not the issue, but rather that systemic ableism contributed to so many of the factors that influenced her choice, including her parents’ perceived burden and the attitudes of her health care team, and that had she not acquiesced, her ability to make a choice may not have been one at all.