Through a Disabled Mind
Before a child takes their first breath, questions already arise about the moral considerations involved in shaping their very existence. Is a future child merely a project to be optimized based on parental preferences, or a future individual deserving moral respect for their natural physicality? In this paper, I examine this conflict within the context of disability and reproductive choices. I contend that while we should uphold the view that disabled bodies are simply different and deserving of social acceptance, the more intricate issue is whether and when it is permissible to intervene in cases where a body is not just different, but fundamentally at odds with its own capacities and sense of agency.
The discussion surrounding reproductive choices typically revolves around two primary perspectives: recognizing parents’ right to pursue a thriving life for their children (Kittay, 2019) and viewing the disabled person as a “mere difference” rather than a “bad difference” (Barnes, 2014). Eva Ferder Kittay supports prenatal selection by describing the rejection of difficult caregiving as an “unwarranted imposition” on parents, emphasizing the parental perspective in reproductive decisions. In contrast, Elizabeth Barnes argues that decisions favoring prenatal selection are often based on biased, intuitive judgments that wrongly equate causing certain traits with the traits being inherently bad or undesirable (Barnes, 2014). I contend that genetic interference is unjustified when it eliminates traits that define an individual’s identity, as this infringes upon the future person’s fundamental right to self-determination and the ability to shape their own physical characteristics.
This fundamental authority, or anticipated autonomy right, remains inviolable with respect to mere differences. However, this prohibition is subject to a narrow exception: intervention is required when narrowly focused on preventing a severe, intrinsic bad, such as the intrinsic pain associated with severe Spinal Muscular Atrophy (SMA), thus fulfilling a strict duty of non-maleficence (Beauchamp & Childress, 2001). Spinal Muscular Atrophy will be referred to as SMA. This duty to avoid harm justifies overriding the protection of self-determination only when preventing intrinsic pain, which acts as a biological barrier to the very exercise of self-determination I aim to protect.
The question of prenatal selection against disabilities requires careful ethical delineation of whose interests hold moral priority when determining the future characteristics of a child. To answer this query, I will proceed as follows. In section I, I reconstruct Kittay’s argument that prenatal selection can be justified as avoiding an unwarranted imposition on parents. Next, in section II, I will develop a self-determination framework that assigns primary moral status to the future individual and defend Barnes’s Mere Difference View as grounding a general prohibition on eliminating identity-determining traits. Following in section III, I argue for a narrow “Spinal Muscular Atrophy” Exception by appealing to the lexical priority of non-maleficence over noninterference when intrinsic suffering annihilates agency. I then address the incoherence objection, which claims that this exception fatally undermines the Mere Difference View, and then defend why the tension it introduces is both limited and morally acceptable.
Section I: Reconstructing Eva Feder Kittay on Parental Imposition
Kittay’s justification for permitting selection against disability centers on the core liberal value of reproductive liberty and the ethical demand to prevent unwarranted burdens on parents. Her argument shifts the moral focus away from the preserved value of the disabled life and toward the situated capacity of the parent.
I will begin by explaining Kittay’s argument about the intense demands of caregiving. She characterizes raising a child with severe needs, especially cognitive disabilities, as an immense, “emotionally, physically, and economically difficult journey” (Kittay, 2019). This profound difficulty stems not merely from the innate burdens of nurturing a child, but from the cumulative weight of “additional costs and responsibilities” that parents must bear (Kittay, 2019). Crucially, this immense obligation is exacerbated by the fact that society is typically “unresponsive to the needs of the child and the family” (Kittay, 2019), failing to provide adequate social and material assistance necessary to share this burden.
Consequently, Kittay contends that forcing parents to assume this severe level of responsibility against their free will constitutes an “unwarranted imposition, unacceptable in a liberal society” (Kittay, 2019). She frames this position within the broader moral acceptance of a woman’s right to abortion for any reason. It follows that consistency demands that if abortion is permissible for the reasons of finance and timing, it must also be permissible when choice is based on the prospective child's potential disabling traits (Kittay, 2019). Furthermore, Kittay rejects adoption as a sufficient moral escape from this imposition, arguing that the resulting emotional toll —the “wrenching — a sorrow that they carry through their lives” — is a devastating cost that ought never be imposed on someone (Kittay, 2019).
While Kittay maintains that a disabled life is intrinsically “worth living” (Kittay, 2019), her permission for selection rests on a critical-pragmatic assumption. She implicitly assumes that the overwhelming difficulty of caregiving is an inevitable, quasi-intrinsic consequence of the disability itself, particularly as it is magnified by prevailing adverse social conditions (Kittay, 2019). This approach validates the parent’s choice to opt out based on resource limitations and the desire to avoid an unwarranted burden, thereby focusing the ethical justification solely on the parent’s prospective experience.
I will now turn to the critical counterposition articulated by Barnes, whose approach defends the intrinsic value of disabled identity and strongly rejects selection motivated by perceived burdens or deviations from societal norms. Barnes advocates for the Mere Difference View of disability. This view holds that many traits typically classified as disabilities are not inherent objective harms but valuable differences in human functioning and identity. Barnes (2014) cautions against allowing selection to be driven by the majority non-disabled population’s “intuitive view of disability,” which erroneously equates difference with inferiority.
Central to Barnes’s philosophical critique is a crucial logical distinction. The fact that an action resulting in impairment is deemed impermissible does not, by itself, entail that the resulting feature is objectively “bad or suboptimal.” For example, society may agree that it is wrong to cause a child to be born deaf through a negligent policy (an evil act), but this does not logically entail that life as a deaf person is inherently suboptimal (a bad outcome). Consequently, under the MDV, selecting against an identity-defining trait is impermissible because it rejects a valuable way of human existence and infringes the intrinsic authority of the future individual (McMahan, 2005).
The tension between Kittay and Barnes reveals a fundamental philosophical conflict over the primary subject of prenatal selection. Kittay frames selection as contingent on the environment, thereby justifying the choice as an escape from an “unwarranted imposition” on the parent’s journey (Kittay, 2019). By contrast, Barnes defends noninterference, grounding her view in the inviolable identity of the prospective child (Barnes, 2014).
While Barnes' defense of disabled identity through the MDV is compelling in its protection of human variation, her framework lacks a clear boundary for intervening to prevent extreme intrinsic physical suffering. The prohibition against eliminating mere differences risks compelling the creation of lives defined by non-consensual agony.
My argument intends to fill this gap. Intervention is permissible, and perhaps morally required, when narrowly focused on preventing a severe, intrinsic (non-relative) bad. For instance, our case of SMA is expected to cause profound, unmitigated, and chronic agony; intervening to prevent that life does not constitute a generalized judgment against disabled identity. Rather, such intervention fulfills the specific duty of non-maleficence, which holds lexical priority over the right to noninterference. It follows that while upholding the MDV for traits that are mere differences, the principle of self-determination must incorporate an exception where intrinsic suffering annihilates the prospective child’s core interests and capacity for agency.
Section II: Self-Determination and the Mere Difference View
The question of prenatal selection against disability requires a precise ethical standard to determine whose interests hold moral authority when decisions about a prospective individual’s basic physical constitution are made. The central thesis defended here is that the future individual, rather than the prospective parent, is the primary moral subject. This prioritization is grounded in the distinction between morally impermissible interventions, which violate the individual’s right to determine their own identity, and the narrowly defined circumstances under which intervention is not only permissible but morally required.
I will establish a moral metric for evaluating reproductive selection: the prospective individual's inherent right to self-determination. Subsequently, I will differentiate this principle from the parental concerns articulated by Eva Feder Kittay. I will deepen the defence of the Mere Difference View by appealing to the philosophical logic developed by Barnes. Finally, I will justify the necessary exception to noninterference, exemplified by severe SMA, by arguing that chronic agony creates a biological barrier to agency, thereby establishing the lexical priority of the duty of non-maleficence.
I assert that the ethical evaluation of interventions that permanently alter the fundamental constitution of a prospective individual must proceed from the perspective of that future person’s inherent autonomy rights. The sheer permanence of genetic intervention demands that the ultimate authority over the constitution of the body rest with the person whose life will be lived in that body.
I define this inherent moral priority as self-determination: the fundamental authority over one’s own physicality and the inviolable right to determine the eventual constitution of one’s body and mind.
This authority, by nature, must be protected in advance of the individual’s maturity. It functions as an “anticipatory autonomy right,” belonging to the class of “rights in trust” (Feinberg, 1992). These rights are features “to be saved for the child until he is an adult, capable of exercising free choice.” Crucially, any action taken now that “closes off” specific key options violates this anticipatory right (Feinberg, 1992). The child’s enduring personal interests are rooted in their prospective growth and development (Feinberg, 1992). Therefore, decisions regarding genetic interventions must be scrutinized primarily for how they uphold or compromise the child's future self-governance.
Now we must distinguish identity from the parental burden. The right to self-determination stands in direct contrast to justifications for selection against disability, which are morally permissible because demanding that parents undertake the extraordinary obligations of raising a child with severe needs constitutes “unwarranted imposition.” She characterizes this as an “immense emotionally, physically, and economically difficult journey” (Kittay, 2019), especially given that society is generally “unresponsive to the needs of the child and the family.” Kittay concludes that rejecting a parental refusal of this burden is “unacceptable in a liberal society.”
While the practical and emotional weight of Kittay’s argument is undeniable, its moral basis is misplaced when viewed through the lens of the child’s inherent rights. When parental decision-making centers on imposing care, it mistakenly grants a parent the authority to eliminate a potential person solely to mitigate their own life circumstances. My argument holds that this societal imposition should not be resolved by preemptively altering or eliminating a future person based on traits that constitute their identity. The philosophical error lies in resolving an injustice rooted in social policy (lack of support) by sacrificing the inherent rights of a non-consenting, though prospective, individual (O’Neill, 2003).
Further clarifying the scope of parental interference requires adopting the Mere Difference View, which is crucial for distinguishing protected characteristics from verifiable harms. I rely here on the rigorous distinction elaborated by Elizabeth Barnes. Barnes cautions that judgments about altering a child’s identity-defining characteristics are often unconsciously skewed by the “intuitive view of disability” held by the non-disabled majority. This view frequently conflates a trait’s being undesirable in a competitive society with that trait’s being objectively detrimental to the individual who possesses it (McMahan, 2005).
Barnes fundamentally separates the morality of the act from the quality of the feature. She argues that the widely accepted impermissibility of causing a feature (such as causing a child to be blind or intellectually disabled) does not, by itself, entail that the resulting feature is intrinsically “bad or suboptimal” (Barnes, 2014). For features categorized as mere differences, such as deafness or specific forms of neurodivergence, society's collective resources should focus on accommodation and assimilation rather than eradication.
Selection against a mere difference constitutes a direct violation of that individual’s right to self-determination. Such interventions are wrong precisely because they are permanent, irreversible decisions– a sweeping removal of an aspect of identity, made before the individual can consent to or reject that trait (O’Neill, 2003). By preemptively eliminating these traits based on current social stigma or parental preference, we deny the individual the capacity to affirm later that the characteristic is central to their selfhood, thereby violating their right to an open future (Feinberg, 1992).
We must justify the exception, the lexical priority of nonmaleficence. While affirming the MDV and the general principle of noninterference, a narrow exception must be carved out to address cases of profound intrinsic suffering. This exception is one in which the duty of nonmaleficence holds lexical priority over the right to noninterference. I define this threshold for the exception as the presence of a severe, intrinsic (non-relative) bad. This concept holds that intervention is justified only when the harm exists independently of social structures. An impairment that constitutes a non-relative bad would remain a source of misery even in a society that offered perfect material and emotional accommodation. Following Elizabeth Harman's framework for evaluating actions that affect existence, I define harm for the prospective individual as damage to the individual's mental, emotional, and physical state that affects quality of life, including variable suffering such as pain, early death, or bodily damage (Harman, 2004).
The archetypal case justifying this exception is the chronic, non-beneficial agony associated with severe SMA, as discussed earlier. Intervening against a condition of severe SMA, where intrinsic pain is inevitable, is permissible because fulfilling the strict duty of non-maleficence, preventing harm, outweighs the otherwise inviable right to non-interference. This does not concede the generally dismissive Bad Difference View; instead, it establishes a singular, necessary moral imperative for intervention defined solely by the quality and severity of the prospective suffering.
It is essential to justify why suffering mandates intervention, while the acceptance of difference typically prohibits it. My argument holds that chronic physical agony is not simply a trait to be accommodated; it functions as a biological barrier to agency. The goal of respecting individuals' right to self-determination is to preserve the development of a full, capable, and autonomous agent (Feinberg, 1992). Autonomy minimally requires two conditions: (1) liberty (independence from controlling influences) and (2) agency (the capacity for intentional action) (Beauchamp & Childress, 2019). Severe, persistent non-behavioral pain directly compromises the individual’s core capacity for agency.
Chronic agoraphobia consumes the cognitive resources necessary for rational deliberation, reasoning, and the formation of coherent life plans. This persistent suffering subjects the individual to the “tyranny ofone'ss own body.” In clinical ethics, when chronic, uncontrollable pain or severe affliction impares an individuals psychological capacities it may be grounds for deeming that the person incompetent and unable to make autonomous decisions (Beauchamp & Childress, 2019) If pain is sufficiently severe to threaten competence in the adult, then allowing a child to develop into an adult whose entire existence is dominated by agony is profound voilation of there antiicaptory right to autonomy.
The synthesis of this position is clear: by intervening to prevent intrinsic pain, we are not judging or fixing a person's value, which the MDV protects, but rather eliminating a psychological impediment that consumes the very resources required for autonomous existence. The moral failure in genetic interference lies not in the valuation of the disabled life, but in the violation of the child's right to self-determination, which is overridden only by the strict duty of nonmaleficence to prevent suffering that annihilates agency itself. The intervention, in this narrow case, is an act of enabling the prospective individual's autonomy.
Section III: Objections and Responses
I will now challenge the exact framework established, which I shall term the Incoherence Objection. This objection targets the conceptual consistency of the Spinal Muscular Atrophy Exception and the “agency-enabling” defense of self-determination. I will begin by steelmanning this objection to ensure its force is fully recognized. I will then provide a multi-layered response that differentiates physiological pain from identity-determining traits and argues that a baseline of agency is a biological prerequisite for the very self-determination my thesis defends. Finally, I will explain why partly rejecting the Mere Difference View in cases of extreme intrinsic suffering is an acceptable and necessary consequence, maintaining that while this position does create a tension with the Mere Difference View, the duty of nonmaleficence must hold lexical priority over the celebration of difference in cases of agony.
An objector may claim that the position I have defended is fundamentally incoherent because it attempts to rely on Barnes' Mere Difference View, while carving out an exception that undermines it. The objector’s argument proceeds as follows: in a condition like SMA, the physiological reality of the condition, including its associated pain, is not a secondary, accidental characteristic that can be conceptually peeled away from the individual's identity; the biological experience of the condition is often inseparable from the individual’s way of being in the world.
An objector would argue that by selecting against a fetus based on the predicted pain of SMA, I am logically equivalent to rejecting the disability itself. By characterizing this pain as a non-relative bad that necessitates intervention, I am, according to the objector, endorsing the Bad Difference view. If the MDV, as Barnes (2014) defines it, holds that disability is a neutral variation akin to skin and race or sex, then any move to “prevent” a specific manifestation of it because it is intrinsically undesirable betrays neutrality. The objector would persist by claiming my self-determination thesis is merely a rhetorical shield for the intuitive view of disability, held by the non-disabled majority, which mistakenly conflates physical difference with a suboptimal life (Barnes, 2014; Kittay, 2019). Thus, the objection concludes that one cannot consistently celebrate disabled identity while also mandating its elimination in cases of severe suffering.
In response to the Incoherence Objection, it fails to recognize a crucial functional distinction between identity-determining traits and agency-undermining sensation. I will argue that chronic extreme pain is not a “perspective” or a “culture” but rather a physiological tax on the human organism. To explain this concept, we must examine how pain interacts with our cognitive architecture. As Beauchamp and Childress note, autonomy requires both liberty and agency. Chronic physical agony acts as a powerful internal “controlling influence.” It is a biological sensation that aggressively consumes the cognitive and emotional bandwidth required for a person to form an identity or exercise choice.
Critically, this distinguishes pain from a neutral difference, such as deafness. There is a qualitative difference between the mere difference of deafness and the intrinsic badness of severe pain. As Barnes (2014) might argue, it possesses a different but fully functional deliberative standpoint. Deafness does not inherently tax the brain’s ability to plan, reason, or engage. As Harman (2004) points out, causing a state that is “worse than life with a healthy bodily state,” specifically citing pain, constitutes a harm regardless of the non-identity problem. In this view, pain is not a “way of being” but rather a biological noise that prevents “being” from occurring in an autonomous sense.
Furthermore, for an individual to possess the right to self-determination, they must first possess a biological baseline of consciousness that is not entirely dominated by involuntary agony. This is what I call the Baseline Argument.
My thesis defines self-determination as the fundamental authority to determine one’s own physicality. However, the capacity to exercise this authority, even as a “right in trust,” presupposes a subject capable of developing an internal narrative (Overall, 2011; Feinberg, 1992). If a future person is pre-programmed by a genetic condition to experience a constant non-beneficial suffering, their capacity for agency is annihilated before it can ever be realized.
Therefore, intervention for cases like SMA is not about fixing a person's value or judging their identity as suboptimal, but rather about protecting the prerequisites for their sovereignty (Douglas et al., 2010). To allow a child to be born into a life of inevitable non-consensual agony is to violate their future autonomy by ensuring they never possess the mental quietude necessary to make their own choices. By alleviating this intrinsic bad, we are not erasing a person, but enabling a sovereign who will eventually be able to determine their own life history, free from the biological barrier that chronic pain imposes.
The objector might persist in claiming that this response still involves a partial rejection of the Mere Difference View, as I am effectively stating that a specific biological state (one involving extreme pain) is “bad.” In my response, I contend that, at least in part, rejecting the Mere Difference View in these extreme cases is an acceptable and necessary consequence of a rigorous bioethical framework.
The lexical priority of non-maleficence justifies this move. While the Mere Difference View provides a vital corrective to social prejudice, it must not be allowed to override the primary moral duty to prevent profound intrinsic harm. As Harman (2004) argues, there are reasons against an action in virtue of the harm to future individuals, even if those individuals would not otherwise exist.
Consider a comparative example. If we can use genetic selection to eliminate deafness, we would be eliminating a mere difference, a state that, while different from the majority, allows for a full range of human goods and the development of a “unique identity” (Kittay, 2019). However, a painful disease would lead to a suffering that would remain catastrophic even in a perfectly supportive society. It follows that the obligation to prevent such agony is more fundamental than the obligation to preserve biological diversity. Crucially, this distinction preserves the integrity of the MDV for the vast majority of disabilities by separating them from conditions whose primary trait is the destruction of the person’s own capacity for flourishing.
In conclusion, the SMA exception is not a betrayal of the value of disabled lives but a necessary boundary that ensures we do not confuse the celebration of physical diversity with a callous indifference toward inescapable misery. The right to determine one’s own physicality must include the right to be born with the basic biological capacity for such determination.
IV: Final Remarks
We have navigated between two perspectives on reproductive issues ethics: Kittay’s (2019) defense of selection to avoid the “unwarranted imposition” of a “difficult journey” placed upon parents, and Barnes’ Mere Difference View, which cautions that causing a feature does not necessarily make that feature “suboptimal” or “bad.” The resolution I have defended is the self-determination framework, which bridges this gap by shifting the moral priority to the future individual’s inherent authority over their own physicality. This framework treats identity-determining traits as mere differences while refining Kittay’s concern to acknowledge that some biological states are objectively harmful to the child’s future autonomy.
Furthermore, I would like to reaffirm my stance. The SMA exception is not a judgment on the worth of the disabled life but a protection of the biological prerequisites for agency. Because self-determination requires a baseline of consciousness not dominated by the physiological tax of chronic agony, preventing such pain is the ultimate act of respecting a child's future sovereignty (Douglas et al., 2010). Agency, defined as the capacity for intentional action, is annihilated when cognitive and emotional resources are consumed by inescapable suffering (Beauchamp & Childress, 2019).
The broad bioethical rationale is to safeguard the right to an open future. By adopting this framework, society can stop the eugenic impulse to “cure” neutral differences, such as deafness or neurodivergence, and instead focus on social support. We must remain humble in our genetic choices, yet we cannot be so humble as to ignore the reality of biological torture that deprives a child of the right to an open future. By prioritizing the biological prerequisites for agency, we do not betray the Mere Difference View; rather, we preserve its integrity by ensuring the future individual has the sovereign capacity to determine their own life history.
References
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