The Purpose and Function of Rights

According to one prominent rights theorist’s account, rights in a liberal society ascribe certain interests substantially greater protection than other interests,^{Footnote 11} so rights claims have “special normative force.”^{Footnote 12} As Michael Freeman states: “To accord rights is to respect dignity: to deny rights is to cast doubt on humanity and on integrity. Rights affirm the Kantian principle that we are ends in ourselves and not means to others’ ends.”^{Footnote 13}

Although the purpose of rights is relatively uncontroversial, there are different views as to how they function. Two conceptions of rights are the choice/will theory and the welfare/interest theory of rights. Choice theorists claim that rights serve to protect the autonomous choices of the rights holder. On this account, those incapable of making a choice would be precluded as rights holders. This approach is particularly problematic in the context of young children or those with severe cognitive impairment. In contrast, interest theorists claim that rights function to protect the interests of the rights holder and in so doing further the welfare or well-being of the individual.^{Footnote 14}

The present analysis adopts Samantha Brennan’s approach to determining the applicable rights approach, which is premised on the view that it is the nature of the rights-holding individual in any given case that determines whether rights will protect interests or choices.^{Footnote 15} Although Brennan formulates her argument in the context of moral rights, this can plausibly be extrapolated to interpreting the nature of rights declared in the international conventions under discussion, and this may inform a best-interests analysis.^{Footnote 16}

A Gradualist Account of Rights

Brennan cogently argues that the model of rights providing the best fit in the context of minors is a gradualist one, such that the (theoretical) nature of a right is contingent on a child’s status on the continuum of development that exists between childhood and early adulthood. Implicit in this approach is that the psychosocial process of development results in children changing from being the sort of beings “whose interests are protected by rights” to those “whose rights protect their choices.”^{Footnote 17} So whereas rights initially protect a young child’s interests, this changes as the child develops intellectually, emotionally, and morally, such that the nature of his or her rights evolves to protect the individual’s choices.

Importantly on this approach, the interest theory of rights affords rights both to a very young child and to a severely cognitively impaired individual who lacks capacity. In the case of a child who will develop legal capacity as a mature minor or young adult, or in the case of a cognitively impaired individual who may have the capacity to make his or her own decisions with supported decisionmaking in the future,^{Footnote 18} rights will gradually become premised on the choice theory of rights and will thereafter protect his or her choices. Also significant is an implicit caveat about the gradualist approach, which is that the assignment of rights on the interest theory cannot be counter to the (immature) minor’s interests. This is consistent with legal philosopher Joel Feinberg’s approach to child rights.

Feinberg claimed that rights generally protect an individual’s basic welfare interests (including health, bodily integrity, privacy, and the inherent interest in being protected from harm).^{Footnote 19} He also claimed, as do others, that children have an interest in having certain future rights protected (metaphorically, held in trust) until they reach adulthood and can determine their own values and conception of a good life.^{Footnote 20} Feinberg characterized this as a child’s “right to an open future” the corollary of which is children’s right not to have their future interests illegitimately diminished or thwarted by decisions of their guardians, or by adjudicators, or by the minors themselves.^{Footnote 21} This is not just an abstract philosophical concept. Although not discussed in rights language, the concept of protecting a child’s future interests in best-interests determinations is well known to the law, as is exemplified in a recent decision of the UK Court of Appeal in the case of Re G.^{Footnote 22}

Best Interests Determinations

The Court of Appeal case concerned a parental dispute over schooling—consequently, it was not a matter of potential risk or harm to the children involved but a private dispute that nevertheless had to be determined by reference to the statutory principle that the welfare of the child must be the “paramount” consideration.^{Footnote 23} In this context, the UK courts have considered that “welfare” is synonymous with “well-being” and “best interests.”^{Footnote 24}

Re G involved three children whose parents were raised as Chassidic Jews. After the parents separated, one parent wanted the children to attend an ultraorthodox single-sex school, and the other a modern orthodox school. The decision would have implications not only for the children’s schooling but more broadly for their rules for living, which would determine to a large degree the options open to them as adults. Judge Munby, who delivered the lead judgment, applied a holistic approach to child welfare, stating that it

Judge Munby expressly noted that decisions regarding schooling generally fall within the scope of parental discretion.^{Footnote 26} After posing the question as to what the task of the ordinary reasonable parent is, he posited three values of contemporary society that he considered should inform the parental project. First of these was that “we must recognize that equality of opportunity is a fundamental value of our society.” The second was to “foster, encourage and facilitate aspiration.” The third objective

Consequently, he opined that when such decisions are devolved to the court as “judicial parent,” “the judge must be cautious about approving a regime which may have the effect of foreclosing or unduly limiting the child’s ability to make such decisions in the future.”^{Footnote 28} Arguably there is considerable synergy between Brennan’s and Feinberg’s approach to rights, and the legal principles applied judicially when determining a minor’s best interests.

As already noted, a child’s welfare interest in being protected from harm not only imposes obligations on others, it also places limits on the sorts of self-regarding decisions a child might make. Consequently, an interest in avoiding harm would justify limiting a child’s liberty to make potentially disastrous self-regarding choices, until he or she is fully capable of understanding the implications of a decision. Therefore, an interest theory approach implies a right to be protected from harm, including potential harm arising from one’s own (incapacitous) decisions.

In a prior article in this issue Gillett provides a contemporary example that illustrates such a gradualist approach: the case of children with gender dysphoria, which is when a child is born one sex but identifies with the opposite sex.^{Footnote 29} An emerging approach to gender dysphoria in prepubertal minors is to initiate a course of drug therapy (puberty blockers) in order to forestall puberty and the development of secondary sex characteristics.^{Footnote 30} This buys time for the young adult to develop psychosocially and form stable, long-term preferences, while at the same time avoiding the development of secondary sexual characteristics. The rationale for what is fast becoming the orthodox approach to gender dysphoria accords with Brennan’s interest theory of rights and Feinberg’s concept of the right to an open future. That is, due respect is accorded to the implications of gender dysphoria on a minor’s psychological and emotional health. To this end, treatment is given that will diminish the physical and emotional distress associated with sexual development, but a decision to commence irreversible sex-changing surgery is delayed until the child or adolescent reaches sufficient maturity to make permanent and life-changing decisions. Clearly, Brennan’s approach mirrors the common law approach to the legal right to autonomy of minors, whereby autonomy and legal capacity is gradually developed with maturity and is commensurate with the significance of the decision at hand.^{Footnote 31} Significantly, a gradualist (or competency-based) approach to rights also appears in judgments of the European Court of Human Rights.^{Footnote 32}

This brief analysis suggests that rights and best interests are not, or are not necessarily, mutually exclusive in the case of minors and the severely cognitively impaired. Rather, rights signal important interests that mandate respect and protection in determining best interests. However, this only takes us so far, as an adequate defense of the best-interests standard must be cognizant of its major criticisms. The following section addresses the nature of these critiques, and whether they are necessarily fatal to best-interests reasoning.

Best Interests: Smuggling Assumptions Based on Majoritarian Values

The concept of best interests has been subject to ongoing critique.^{Footnote 33} A recurrent criticism of the best-interests standard is that it is susceptible to being hijacked by the particular ideological views or values of the decisionmaker,^{Footnote 34} a particular risk in the context of physical and/or cognitive “difference,” as in the examples found in Gillett’s article.

The disability rights movement has identified significant and problematic assumptions regarding disability and impairment made by the nondisabled.^{Footnote 35} It claims that majoritarian assumptions about the lived experience of disability are erroneously informed by the medical model of disability, which construes disability as exclusively resulting from physical and mental impairment. In contrast, the social model claims that it is not impairment per se that disables an individual but, rather, society that inadequately provides for persons with disability. Although it is not possible to go into this debate in detail here, two aspects of the critique are particularly relevant in this context. First is the claim that the medical model is premised on a (discriminatory) normal-abnormal dichotomy.

It is claimed that “the normality-abnormality construct is an inherent feature of the medical model of disability where disability is perceived as an aberration which needs to be removed, corrected or hidden.”^{Footnote 36} On this basis, the disability rights movement challenges any best-interests decisions based on an assumed imperative to normalize what is considered by the mainstream as “abnormal,” or “transgressively embodied,” or simply “other.”^{Footnote 37} An inherent bias toward normalizing difference that is based on contestable assumptions regarding the lived experience of “differently” constituted human beings should clearly be a concern for the law. However, this article suggests that this does not pose a fatal challenge if those assumptions are expressly identified and openly scrutinized—as they often are in the disability studies, ethics, and legal literature.

Assumptions regarding anomalous embodiment are rife in the context of the examples provided by Gillett—yet it is not hard to also find accounts that challenge them. For example, the assumption that being conjoined is always an unqualified harm is disputed in the literature.^{Footnote 38} Similarly, the “full” Ashley treatment (involving radical medical and surgical interventions) has also been denounced by many of the disability rights community for breaching Ashley’s “inherent” right to dignity based on contestable assumptions.^{Footnote 39} Ouellette quotes one disability rights advocate who claims:

It has also been claimed that the Ashley treatment was informed by erroneous assumptions regarding disability and womanhood. Malhotra and Neufeld, who consider the Ashley treatment from a feminist and critical disability perspective, argue that “[t]he double oppression of being both a woman and disabled places Ashley in a situation in which her inability to perform the ‘natural’ function of a woman, bearing and raising children, means that her body is managed or disciplined in a more invasive and permanent manner than most women experience.”^{Footnote 41} Ethicist George Dvorsky provided a startling example of such reasoning. He responded to criticisms of the Ashley treatment by famously stating on an ethics blog that “the estrogen treatment is not what is grotesque here. Rather, it is the prospect of having a full-grown and fertile woman endowed with the mind of a baby.”^{Footnote 42} Such a problematic claim (which he has since acknowledged himself) sends a message regarding “anomalous” embodiment that many in the disability rights community rightly take issue with. It implies a value judgment that the individual is flawed simply because she does not conform to normal female embodiment and function, rather than focusing on a robust assessment of the best interests of the individual as informed by a critical assessment of the relevant claim rights, evidence regarding her lived experience of disability, and open-future/future-agent considerations.

Gillett suggests that a “principle of psychosomatic harmony” may assist when making best-interests determinations. Although this is an appealing concept, unless it is adequately interrogated in each particular case, it could also become a tool for smuggling in majoritarian ideas of normalcy. Arguably, close scrutiny of the objective underlying such requests for treatment is crucial. If it cloaks a view that treatment is necessary to “normalize” a child’s “transgressive” embodiment and thereby avoid her becoming a “girl/woman” or a “child in a woman’s body,” it is premised on discriminatory and offensive sentiment (although intervention could still be in that individual’s best interests based on alternative reasoning). To the extent that any decision is solely informed by discriminatory reasoning, the intervention would, morally speaking, constitute an abuse of power. In contrast, if best-interests reasoning is based on a robust assessment of the actual child’s welfare and experiential interests and is not negated by open-future/future-agent considerations, such as opportunities gained by the child reaching his or her full growth potential or retention of fertility, no rights or abuse-of-power issues should arise.

A second important aspect of the disability rights movement’s manifesto challenges what it claims is the “disabling” effect of inadequate social support for those with disabilities and their families. Consequently, a related critique of the best-interests analysis is the risk of judicial deference to clinical opinions that are solely informed by the medical model of disability. Beverly Clough argues that “while procedural protection [under the UNCRPD] entails an assessment of the individual’s best interests, it is not necessarily clear that this will be undertaken in a way which adequately scrutinises the way in which the social environment may be augmented to enable liberty, or that best interests assessments can give effect to the changes necessary to enable this.”^{Footnote 43} This is an extremely important political point, although it does not appear to have significant traction in the context of the Ashley treatment. In an article in this issue, Kerruish examines parental and carer narratives both in support of and against the Ashley treatment. It is clear that additional social support would not alter the perspectives of many parents who support the Ashley-type treatment. The parental motivations described—such as to be able to hold, or nurse, or manually lift their child—are not amenable to social interventions such as the provision of hoists for lifting. In fact, parents express a desire to avoid mechanical aids because they reduce the one-on-one human contact that they and, they believe, their child value.

However, a pertinent question is whether, if the family were provided with more than adequate social support, the procedure would still be considered to be the best outcome for the particular child. If yes, then claims that the parents seek the Ashley treatment due to society’s failure to provide families with adequate support are simply not persuasive. However, given the future-agent focus of a best-interests analysis, a further important question is whether, if that individual were eventually cared for outside of the family in the future, the treatment could still plausibly be in that person’s best interest, or whether it would result in reducing meaningful experiences and opportunities. These questions imply that each case—rather than receiving a one-size-fits-all approach—needs to be informed by relevant research on the experiential aspect of disability.^{Footnote 44}

Best Interests and Indeterminacy

A further criticism of the best-interests standard is that it is inherently indeterminate.^{Footnote 45} Kopelman notes this critique and questions

There is no denying that making best-interests determinations may be extremely difficult—nevertheless, decisions must be made. What is important is that the relevant issues are conscientiously traversed, so that any decision is based on first principles—such as equal respect, facilitating a life lived well, and not unduly limiting possible future opportunities (including simple experiential pleasures)—from the perspective of the person at the center of the decision.

Best Interests as Individualistic: Relational Critique

Another challenge made to the best-interests standard is that it is overly individualistic and fails to account for other relevant interests.^{Footnote 47} Relational theory in particular challenges an individualistic approach to assessing best interests.

Relational theorists counter what they consider is the abstract “dominant liberal individualist” conception of the self by claiming that an individual is “socially connected, interdependent, socially encumbered, emotional, relationally constructed, socially constituted, and embodied.”^{Footnote 48} Herring explains that a relational perspective challenges an individualistic best-interests account because it “imagines that we can consider the welfare/best interests of a CLC [child or person lacking capacity] in isolation from those in a caring relationship with her.”^{Footnote 49} He argues for a more nuanced, relationship-based approach to welfare and best interests, stating:

A relational account suggests that when determining best interests, an individual’s lived experience and future prospects should include consideration of the views of the guardians/carers who are directly involved in that person’s network of care.^{Footnote 51} This particular argument is not a critique as such but, rather, an argument for extending the views and interests considered beyond those of the primary individual to those immediately connected to the individual at the heart of the decision. Although responding to this account in detail is beyond the scope of this article, what may be claimed is that the perspectives of relevant others should not be simply dismissed as mere self-interest. However, an important qualifier is that the weight ascribed to such views should be dependent on the “quality of the caring relationship” in order to ensure that the best interests determination ultimately remains a patient-centred one.^{Footnote 52}