Marriage and Parenthood Rights

By: Afsana Islam 

The right to marriage and parenthood is a fundamental human right, but for people with disabilities, it is a contested legal and social development shaped by exclusion, surveillance, and, only recently, a rights-based paradigm. For much of modern history, individuals with intellectual and developmental disabilities were relegated to the margins of society, their intimate lives surveilled through law, medicine, and social policy. Legal systems did not merely fail to recognize their rights; they actively curtailed them, often citing protection, social order, or scientific authority. Through constant advocacy, however, court decisions, legislative reforms, and international human rights frameworks have begun to challenge these assumptions, though significant tensions remain between preserving an individual's autonomy whilst ensuring protection.

Through the 1930s and 1940s, eugenic policy dominated the legal framework in countries such as Sweden. The sterilization laws of the 1930s-40s explicitly authorized the state to sterilize individuals classified as “feeble-minded” or otherwise unfit (1). These laws did not merely regulate reproduction; they effectively denied people with intellectual disabilities the right to marry and form families, or any meaningful connections with others. These laws were justified on the grounds of preventing the hereditary transmission of disability and protecting future children from neglect. In legal and policy discourse, sterilization was framed as a protective intervention “for their own good,” but in practice, it constituted a profound violation of bodily autonomy and parental rights. The state exercised what can be understood as a form of plenary guardianship over the reproductive lives of disabled individuals (2).

The postwar period gradually introduced new factors that would begin to erode this coercive paradigm. In the 1960s, two key developments occurred. First, new contraceptive technologies became available, the birth control pill in 1964 and intrauterine devices (IUDs) in 1966, reducing reliance on sterilization as a method of reproductive control. Second, in 1969, Bengt Nirje articulated the normalization principle, a foundational concept in disability policy. This principle stipulated that individuals with intellectual disabilities were entitled to the same living conditions as the general population, including access to community life, relationships, and sexuality (3). Although not a law, Nirje’s 1969 publication had a profound legal and policy impact, serving as the impetus for deinstitutionalization and the recognition of disabled individuals as adults with social and relational rights.

Despite these shifts, the 1970s and early 1980s saw the persistence of restrictive attitudes embedded in legal and administrative practices. Publications such as the 1980 National Board of Health and Welfare booklet Utvecklingsstörda och föräldraskap and the 1981 government report (SOU 1981) acknowledged that individuals with intellectual disabilities had a legal right to have children. However, these documents simultaneously recommended that professionals advise against parenthood and promote birth control. Importantly, while coercive sterilization had become increasingly untenable, the legal system still permitted significant intervention in family life through child welfare laws. For example, the Children and Young Persons Act, in force during this period, authorized authorities to take children into custody if their development was deemed at risk. This created a legal structure in which parental rights existed in theory but were highly contingent in practice (4).

Legal and professional discourse in the 1980s further institutionalized the dual approach of support and surveillance. Articles published in journals such as Psykisk Utvecklingshämning (e.g., 1984 writings by Margareta Liljeqvist) argued that while individuals with intellectual disabilities had the right to become parents, the best interests of the child must always reign supreme (5). Policies required extensive information-sharing between prenatal clinics, social services, and child welfare agencies. In some cases, professionals were obligated to report expectant mothers with intellectual disabilities to authorities if they did not voluntarily seek support. These practices illustrate how care functioned as a form of surveillance, embedding parental rights within a system of regulatory oversight.

Policies like these were justified through a pathology-based understanding of disability, reinforced by a protectionist ideology rooted in fears about heredity and social degeneration. The U.S. Supreme Court’s decision in Buck v. Bell epitomized this era, upholding compulsory sterilization laws and legitimizing state control over the reproductive capacities of disabled individuals. Justice Holmes’s infamous reasoning, that society could prevent those deemed unfit from reproducing, provided legal validation for thousands of forced sterilizations. Similar policies appeared globally, often justified inter alia by claims about economic burden or the supposed need to prevent future harm (6).

These early legal regimes effectively stripped individuals with disabilities of both marriage and parental rights. Sterilization laws operated as a form of plenary guardianship over the body, eliminating the possibility of family formation altogether. Courts and legislatures frequently framed such interventions as being in the individual’s “best interest,” citing their desire to improve the person’s life, even when those interventions precipitated an abortion or permanently removed reproductive capacity. In reality, these practices reflected a broader milieu of control, where care functioned less as support and more as surveillance and regulation.

A gradual shift began in the mid-20th century, influenced by changing social attitudes and emerging disability advocacy. The normalization principle articulated by Bengt Nirje in 1969 marked a critical turning point. In an attempt for inclusion, care and control became two sides of the same coin (7). The discourse on disability rights has always been nestled between dichotomies of liberty and restraint, dangerous but requires help, right to parenthood vs. the needs of the child. This shift provided the impetus for deinstitutionalization and reframed disability as a social, rather than solely a medical construct. It also challenged the assumption that disabled individuals were inherently unfit for marriage or parenthood.

Despite this conceptual shift, legal and professional practices continued to militate against full autonomy. While individuals with disabilities were increasingly recognized as having the formal right to marry and have children, these rights were heavily qualified. State policies often stipulated that professionals should discourage parenthood, particularly for those with intellectual disabilities. Courts and social service agencies operated within a framework of support and control, where assistance was accompanied by extensive monitoring. Information-sharing between medical providers and child welfare agencies became routine, and failure to comply with recommended services could trigger state intervention.

This period also saw the entrenchment of substituted decision-making models, particularly through guardianship systems. Under plenary guardianship, individuals deemed incapable were stripped of legal capacity, with guardians authorized to make decisions about marriage, reproduction, and parenting. Even where less restrictive models existed, such as the “best interest” standard, decision-making authority remained concentrated in the hands of others (8). Although these frameworks were intended to protect vulnerable individuals, they often relegate disabled people to passive roles, denying them meaningful participation in decisions about their own lives.

Judicial attitudes toward disability rights further illustrate this tension. In City of Cleburne v. Cleburne Living Center, the Supreme Court acknowledged the persistence of discrimination against individuals with disabilities but declined to grant disability classifications heightened scrutiny under the Equal Protection Clause. This decision limited the constitutional protections available to disabled individuals, reinforcing the need for legislative action. In practice, courts continued to rely on generalized assumptions about incapacity, particularly in parental rights cases, where disability was often treated as prima facie evidence of unfitness (9). 

The late 20th century brought increasing scrutiny of these practices. Investigations into forced sterilization and coercive reproductive policies exposed the extent of past abuses, prompting public debate and legal reform. At the same time, scholars and advocates began to challenge the underlying assumptions that linked disability with parental inadequacy. Research demonstrated that parenting capacity among individuals with disabilities varies widely and that, with appropriate support, many are fully capable of raising children. These findings undermined longstanding stereotypes and called into question the legitimacy of blanket restrictions on marriage and parenthood.

A major legislative milestone in the United States was the enactment of the Americans with Disabilities Act (ADA 1990).The ADA marked a paradigm shift by recognizing disability as a protected status and prohibiting discrimination in public services, including those related to family law and child welfare. Title II of the ADA requires states to provide reasonable accommodations, thereby challenging practices that deny disabled individuals access to parenting services or treat them as inherently unfit. However, as legal scholars have noted, the ADA’s impact has been uneven, particularly in the context of parental rights, where courts often defer to state interests in child protection.

Internationally, the adoption of the Convention on the Rights of Persons with Disabilities (UNCRPD) represents the most comprehensive effort to secure marriage and parental rights for people with disabilities. The Convention explicitly stipulates that individuals with disabilities have the right to marry, start a family, maintain their reproductive abilities, and raise children without discrimination. Articles 12 and 23 are especially crucial: Article 12 affirms equal legal capacity and calls for supported decision-making models, while Article 23 prohibits the separation of children from parents based solely on disability. Additional provisions, such as Articles 15, 16, and 17, protect personal integrity and prohibit coercive practices like forced sterilization (10).

The UNCRPD also reflects a broader shift from substituted to supported decision-making. Unlike guardianship systems, which remove autonomy, supported decision-making recognizes that individuals may require assistance while still retaining ultimate authority. This model aligns with contemporary understandings of brain plasticity, which challenge the outdated “brain computer” metaphor that treats capacity as fixed. Instead, decision-making is understood as dynamic and developable, shaped by experience and environment. This perspective provides a more accurate and humane foundation for legal reform, particularly in the context of marriage rights.  A person under guardianship can be denied any romantic contact, even contact as innocent as a letter or text message, which can be denied by their guardian and the court. Fifteen states use the substituted decision-making model, where the guardians make decisions based on what the person wants, attempting to honor their decisions and desires. There are no safety checks in place that hold guardians accountable if they do not discern the wishes of the protected person. Nor to even incentivize guardians to adhere to these wishes or consult the protected person. This oversight, coupled with historical biases, makes it extremely difficult to ensure adequate care and support. The best-interest standard is the other prominent model utilized, with thirteen states adopting this model in their probate codes. In this model, the majority of the power is within the control of the guardian, but the wording differs within the statute. The guardian makes decisions based on their "belief about what is in the general best interest of the protected person" (11). While these standards attempt to control the actions of the guardian by focusing on the interests of the protected person, in operation, these standards work very much like the substituted decision model. Transitioning from plenary guardianship to a Supported Decision Making Model (SDM) can maintain a person's autonomy whilst still providing support when requested by ensuring those with disabilities have the legal authority to make decisions for themselves (12).

SDM reframes autonomy as interdependent rather than purely individual, recognizing that people often rely on others to make and carry out decisions. It consists of flexible relationships and supports, ranging from family and peers to formal arrangements, that help individuals with disabilities make and communicate choices. Although tailored to each person, SDM is guided by three core principles: Emphasize the person with a disability's autonomy, presumption of capacity, and right to make decisions on an equal basis with others; a person's intent [alone] can form the basis of a decision-making process; and individuals with disabilities will often need auxiliary aids (interpreters, assistive technology, facilitated communication, etc.) and other assistance in decision-making (13). 

Nevertheless, significant barriers persist. Courts continue to terminate parental rights at disproportionately high rates for individuals with disabilities, often relying on assumptions of unfitness rather than evidence of actual harm. Out of the one billion people who are living with disabilities, women and girls with disabilities face compounded discrimination, including coerced sterilization, denial of reproductive healthcare, and higher rates of child removal. These practices are frequently justified under “best interest” rationales, even when they conflict with the expressed wishes of the individuals involved (14). 

The persistence of these issues underscores a paradoxical nature of disability law. While modern frameworks emphasize autonomy and inclusion, they coexist with older systems of control that continue to militate against full equality. Guardianship regimes, in particular, remain widespread, often justified as the lesser of two evils regarding institutionalization, but still strip individuals of fundamental autonomy and rights. Similarly, child welfare systems frequently prioritize risk avoidance over family preservation, leading to interventions that disproportionately affect disabled parents.

The history of marriage and parental rights for people with disabilities reveals a complex interplay between balancing autonomy and care. From the coercive sterilization laws upheld in Buck v. Bell to the rights-based framework of the UNCRPD, legal systems have undergone significant transformation. Yet, the legacy of eugenics and paternalism continues to shape contemporary practices. Achieving true equality requires more than formal recognition of rights; it demands a rethinking of legal and social structures to support autonomy, rather than undermine it. Moving forward, supported decision-making and individualized, behavior-based assessments offer a path toward a more just system; one that affirms the dignity, humanity, and relational rights of people with disabilities.

References

[1] Areschoug, Judith. “Parenthood and Intellectual Disability: Discourses on Birth Control and Parents with Intellectual Disabilities 1967–2003.” Scandinavian Journal of Disability Research, 3 Aug. 2005, sjdr.se/articles/10.1080/15017410500246103. 

[2] Ibid

[3] Ibid

[4] Ibid

[5] Ibid

[6] Chris Watkins, Beyond Status: The Americans with Disabilities Act and the Parental

Rights of People Labeled Developmentally Disabled or Mentally Retarded, 83 Calif. L.Rev. 1415 (1995).

[7] May, David, & Simpson, M. K. (2003). The parent trap: marriage, parenthood and

adulthood for people with intellectual disabilities. Critical Social Policy, 23(1), 25-43.

[8] Chris Watkins, Beyond Status: 1415.

[9] Ibid

[10] Powell, Robyn & Stein, Michael. (2016). Persons with disabilities and their sexual, reproductive, and parenting rights: An international comparative analysis. Frontiers of Law in China. 11. 53-85. 10.3868/s050-005-016-0005-6.  

[11] Leib-Neri, M. A. (2023). Love, marriage, & neurodiversity: using neuroscience to equalize marriage rights for people with intellectual developmental disabilities

under guardianship arrangements. Iowa Law Review, 108(3), 1475-1502.

[12] Ibid

[13] Ibid

[14] Powell, Robyn & Stein, Michael. Persons with disabilities and their sexual, reproductive, and parenting rights  53-85.