Fit for Parenthood? The Ethical Implications of Parenthood for People with Cognitive Disabilities

Introduction:

This paper will focus on the ethicality of parenthood for people with cognitive disabilities and whether society has the responsibility to support that right or not. Cognitive disability refers to a broad range of conditions, including intellectual impairments, autism spectrum disorders, and mental illnesses, which affect an individual’s ability to think, learn, remember, and make decisions. However, for the purpose of my research, I will define intellectual disability as congenital cognitive impairments that are present from birth. The first legislation to prohibit discrimination against people with disabilities in programs receiving federal funds was the Rehabilitation Act of 1973. However, many individuals with cognitive disabilities still face obstacles in fully participating in society, raising the question of the extent to which society should support these individuals in becoming parents. In this paper, I aim to discuss the importance of providing social support by examining the challenges posed by the social model of disability for individuals with cognitive impairments, as well as key values such as reproductive rights, responsibility, and fairness.

Reproductive freedom explores the dichotomy between autonomy and paternalism: although individuals with disabilities have the right to make their own reproductive choices, do society or parents ever have a responsibility to intervene? The principle of fairness explores the importance of assessing parenting abilities objectively while ensuring the well-being of the child. While people with disabilities should be evaluated by the same standards as non-disabled parents, stigma and bias surrounding their decision to pursue parenthood often result in unfair treatment.

Case Study:

A 2013 legal case in Oregon involving low IQ scores and the loss of parental rights exemplifies the challenges faced by individuals with cognitive disabilities. A couple, Amy and Eric, with low IQs had their children taken away from them due to concerns about their ability to provide adequate care—child welfare workers said they were “intellectually incapable” of raising their children (Hastings). They came to the attention of social services after a social worker complained the parents weren't attentive enough. The social worker had to remind them to have their son wash his hands after using the toilet, apply sunscreen to his entire body, not just his face, and read to their children (Swindler). Further investigation included IQ tests, where Amy scored a 72 and Eric scored a 66. In response, Amy questioned the relevance of these results, stating, “I don’t think that IQ has anything to do with raising your kids. The only thing that should matter… is that you love them, you’re able to support them and that you’re just there for them and their needs. And I can do that” (Hastings). However, the deputy district attorney Jason Kropf said, “Limited cognitive abilities or lower IQ numbers do have an impact on people… It impacts judgment ability, it impacts insight, it impacts problem identification, it impacts planning and how to solve those problems and also impacts the notion of whether somebody knows whether a problem is fixed or not” (Swindler). It’s quite shocking that the district attorney used IQ scores to judge whether an individual with cognitive disabilities was capable of parenting, given its origins in eugenics (the movement targeted people with cognitive disabilities and forcibly sterilized them to prevent them from having children). This suggests that his decision may have been influenced by his personal bias rather than a genuine effort to act in the couple’s best interests.

Rather than supporting the couple’s efforts to raise their children, the state child welfare agency terminated the couple’s parental rights and placed the boys for adoption. Christopher was put in foster care, and when Amy gave birth to her second son, the state took custody of the baby when he was still in the hospital (Swindler). However, the Circuit Judge ruled that there was insufficient evidence to determine that the couple was incapable of raising their sons, as Amy’s attorney cited that there were only minor parenting deficiencies, such as not reading to their sons or forgetting to put sunscreen on their children. At times, the state argued that the couple asked too many questions, indicating that they didn’t know how to take care of their children. However, at other times, the state said that they didn’t ask enough questions, suggesting their limited cognitive abilities (Swindler). “It was just micro-criticisms of their parenting,” Gerlitz, the attorney, said. “They were things ordinary people do on a daily basis” (Hastings). Thus, Amy and Eric’s 10-month-old son Hunter will be able to spend his first Christmas at home after the judge ruled that the state did not prove he should remain in foster care. 

This case illustrates how individuals—even social care workers—hold biased views towards people with cognitive disabilities becoming parents. Even minor criticisms of their parenting are often treated as evidence of incompetence, and measures like IQ scores are used to determine their parenting abilities. 

Background on Cognitive Disability:

Two key models help shape how we view and understand disability. The first is the Medical Model, which views disability as an impairment within the person’s body as something that needs to be “cured” or “fixed” by medical professionals to improve the individual's quality of life (Buder & Perry). The second is the Social Model, which views the origins of disability as a social construct rather than a medical condition faced by an individual. Restrictions on an individual’s rights are not caused by their disabilities but by society’s inability to provide adequate services to meet the needs of disabled individuals—it is society’s responsibility to provide support so that individuals are no longer disabled. Thus, the social model shifts attention away from an individual's physical or mental impairments to the way in which society includes or excludes them (Shakespeare). 

According to the Union of the Physically Impaired Against Segregation, “In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society (UPIAS, 1976). While the impairment is due to bodily features like short-sightedness, disability itself is the disadvantage caused by society, which prevents these individuals from participating in social organizations (Shakespeare). For example, we don’t tend to think of short-sightedness as a disability anymore because providing appropriate social support, in this case, glasses to improve eyesight, means that the individual is no longer disabled. Likewise, imagine a wheelchair user trying to access a building’s entrance with stairs but no ramp. The medical model would say that the person’s difficulty entering the building is due to physical impairments, not because the building does not have a ramp. The social model, on the other hand, would say that constructing sidewalks and entrances that are accessible for wheelchair users would turn the disability into an ability. 

However, the social model does not fully address the issues faced by individuals with cognitive disabilities. No matter how much social support is provided, it’s hard to have a world in which individuals with intellectual disabilities can fully participate in society, as these impairments affect both brain function and development. While specialized education can be offered, challenges inherent with cognitive disabilities, such as communication and information processing difficulties, may be complex to fully address. Additionally, the social model primarily focuses on the external barriers created by society; in other words, this model is tailored to address the needs of individuals with physical disabilities. Individuals with cognitive disabilities, on the other hand, often experience internal barriers that significantly impact their lives, even when external accommodations are available. 

Additionally, there are many important pieces of legislation that support individuals with disabilities. The Americans with Disabilities Act (ADA) 1990 is a key legislation that protects the rights of individuals with disabilities, “prohibiting discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local government’ programs and services” (U.S. Department of Labor). Title I of the ADA protects the rights of both employees and job seekers. Title II applies to public transportation run by public entities, while Title III pertains to public accommodations. Lastly, Title IV, which is regulated by the Federal Communications Commission (FCC), ensures that individuals with hearing or speech disabilities have access to telecommunications services that allow them to communicate (Department of Labor). 

Similarly, the Individuals with Disabilities Education Act (IDEA) 1990, which “makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensure special education and related services to those children, supports early intervention services for infants and toddlers and their families, and awards competitive discretionary grants” (U.S. Department of Education), is a crucial act that safeguards the rights of these individuals. Part A covers the general provisions of IDEA, while Part B outlines the legal requirements for schools to provide special education and related services to students with disabilities from ages 3 to 21. Part C focuses on early intervention for infants and toddlers with disabilities (birth to age 2), and Part D provides support, funding, and other resources to improve special education services nationwide (National Center for Learning Disabilities). 

Furthermore, individuals with intellectual disabilities often face greater difficulties in parenting compared to their counterparts. First, they tend to have limited access to resources for starting a family, such as financial stability, social support networks, and access to parenting programs or services. These barriers can create additional difficulties for them throughout their parenting journey (Zijlstra). Additionally, they have poorer access to healthcare compared to other families due to obstacles in accessing quality medical services or challenges stemming from their cognitive impairments, such as understanding doctors’ recommendations or completing paperwork. Coupled with the negative attitudes of medical professionals toward individuals with intellectual disabilities becoming parents and the lack of time and expertise needed to support these patients, these challenges are further exacerbated for these individuals who are already at a significant disadvantage (Zijlstra). Thus, it becomes evident that preventive measures should be implemented at an earlier stage (i.e., during the first weeks of pregnancy) to mitigate the accumulation of risk factors that could affect the potential child's health and well-being (Zijlstra).

Support Systems for Individuals with Cognitive Disabilities:

There is evidence that there is a lack of appropriate support for parents with cognitive disabilities. According to Tahir et al., “they are often part of the ‘hidden minority,’ living in the community without formal support systems until they become parents and come under the scrutiny of child protection services” due to concerns about their parenting abilities (Tahir). Support is characterized by two main categories: informal and formal. Informal support is the primary type of help provided by family members, non-family members, neighbors, friends, and peers. The most common form of informal support is babysitting, especially by grandparents, who help parents with intellectual disabilities care for their children. For children, especially, it was important that their supporters were related to them, as this allowed them to form close relationships with their providers (Gudkova). 

On the other hand, formal support refers to the assistance provided by social programs, child welfare agencies, healthcare providers, schools, and other support services. However, support from social networks is often limited and short-term, which raises concerns, as families in which one or both parents have an intellectual disability need constant and specialized attention from these support systems (Gudkova). One reason for the limited support is the difficulty in identifying mothers with an intellectual disability due to a lack of formal diagnosis or the fear of judgment and discrimination. Support workers often treated these individuals in a humiliating and belittling manner, contributing to their fear and mistrust of support services (Gudkova). 

Yet, these individuals heavily depend on the support provided by their social environments to overcome the daily challenges they face. A study conducted in Israel found that for families with low financial incomes and the father unemployed, financial support from relatives and extended family was critical. Furthermore, the parents’ well-being improved significantly with the help of various social institutions and residential care facilities that cared for the child (Kandel).

In another case in 1996, Lisa, who had Down Syndrome, gave birth to a son, Nic, who also had Down Syndrome. Lisa’s mother, Patti, made immense sacrifices to care for both her daughter and grandson (Keighley). When Lisa was seventeen, she and her mother discussed having tubal ligation surgery as a form of birth control, but she immediately said “no.” Although Patti knew she would need to support Lisa, she didn’t realize the extent of help Lisa required. She overestimated Lisa’s abilities and, as a result, had to take on more responsibility than expected (Keighley). “It took a village to raise Lisa, a teenager with Down Syndrome,” said Patti as she described the enormous amount of resources the family employed over the years. At 16, Lisa decided that she wanted to live independently, so her mother contacted a range of agencies to find suitable housing for her so that she could move out two years later. Lisa moved closer to Patti when she was pregnant. After Nic was born, he would spend three nights per week with Lisa, and a helper stayed with her overnight to help her with tasks she couldn’t do on her own. Ultimately, however, Patti and Norm, her husband, had to raise Nic themselves in their own home (Keighley). Although Patti repeatedly told Lisa she was the best mother she could be, “the sacrifice has been enormous for Patti; at times, she even resented Lisa… Lisa had no idea how much the course of my life had changed because of a decision she made… she was very clear about what she wanted but had no idea about the impact on others,” Patti explains. “The word independence is a wonderful word… we are all dependent to a certain degree. Their dependence is different than ours… They cannot survive without parents or agencies… [But] I have no regrets.” This case highlights the importance of respecting the personal autonomy of disabled individuals by providing support, ensuring they understand the consequences of their decisions, and establishing clear boundaries. However, it’s important not to overburden caregivers; their mental health and well-being should also be prioritized. Child protection workers often experience high levels of stress, burnout, and fatigue. Thus, ensuring they have access to resources and are not emotionally overwhelmed is crucial, as neglecting their mental health can compromise the quality of care given to patients, and organizations have a responsibility to protect their employees' well-being (Tahir). 

Stigma Surrounding Individuals with Cognitive Impairments:

Several studies have found prejudiced attitudes among child protection workers towards parents with intellectual disabilities, often assuming that these parents were incapable of raising a child. Negative opinions and stigmas are apparent through the high rates of children placed in adoption or foster care, discrimination in custody trials, restricted access to birth and adoption services, lack of awareness of the needs of parents with disabilities, and insufficient support (Rothler). Women, especially, live under conflicting messages: as women, they are expected to become mothers and lead a fulfilling and productive life, yet their disability is often characterized by the inability to perform “normal” motherly responsibilities (Rothler). The exclusion of women due to the challenges associated with their disability impacts various aspects of their lives, including education, employment, and sexual and reproductive health (Lee). Additionally, the stigma faced by these individuals when they pursue parenthood causes them to “even hide their own children… Unless something happens, then they come and look for help” (Lee). The fear of judgement leads some individuals to avoid seeking support until they are in a dire situation, showing how societal bias can discourage them from asking for help. This also highlights a lack of trust in social support systems, which are meant to protect these individuals rather than discriminate against them. 

Evidence also suggests that women with disabilities have reduced access to health services and experience higher unmet health needs. It also shows that they are two to four times more likely to experience physical and sexual violence, including intimate partner violence, abuse by family members, forced sterilization, or rape, compared to women without disabilities (Lee). This section highlights how women with cognitive disabilities often face exclusion from various aspects of life, such as education, employment, and health services. They are also at a significantly higher risk of abuse, violence, and exploitation, even from their own families, which can lead to unintended pregnancies, limited access to healthcare, and a violation of their right to make informed decisions about their bodies. 

Additionally, many people assume that a patient’s cognitive disability affects his/her competence to understand or communicate. However, it’s crucial to recognize the distinction between comprehension and communication. Some individuals can understand but cannot communicate, while others cannot understand but can communicate, highlighting the importance of personalized support systems. Thus, people may either overestimate or underestimate an individual’s specific abilities. Clinicians may be inexperienced in helping patients with disabilities understand complicated medical questions and jargon, making it difficult for them to fully understand their condition, treatment options, and the consequences of their decisions. This lack of understanding can lead to frustration, miscommunication, and challenges in making informed choices about their own health (Pérez-Curiel). As one social worker noted in a study, “Really, I don’t think I’ve ever worked harder on a case. It’s time laborious when you’re actually meeting with them. You spend double the amount of time or at least time and a half. You have way more collateral communication” (Tahir).

Additionally, in a study conducted in the UK, midwives stated that they lacked sufficient training and time during appointments to offer adequate support to women with intellectual disabilities (Bradbury-Jones). Similarly, many professionals stated that they lacked adequate training to communicate effectively and properly address the needs of these women. Many felt “hopeless,” “unskilled,” and “torn” when balancing the different needs of both the children and the parents (Tahir). Many studies have also noted the need for training to empower social workers and improve their ability to effectively deal with the complicated challenges they encounter when interacting with intellectually disabled parents (Pérez-Curiel).  

Furthermore, people with cognitive disabilities are frequently stereotyped as asexual, uninterested in pursuing social or sexual relationships, and incapable of making decisions on matters about sexuality, reproduction, and parenthood (Pérez-Curiel). Over time, these misconceptions have reinforced societal beliefs that they lack the desire to start families or form relationships. This is also due to the lack of sex education tailored to the specific needs of individuals with disabilities, which many social workers or educators are not adequately trained in. Thus, it’s important for them to understand society’s attitudes towards disability and sexuality and how these views affect the individuals they support to provide better care (Kandel).

Lastly, the rhetoric around “mental age” tends to result in stereotypes of infantilism, in which people with cognitive disabilities are treated like children, especially when making reproductive choices. Interestingly enough, one barrier individuals with intellectual disabilities had when initiating relationships was that they felt like they were being treated like children (Pérez-Curiel).

Individuals with cognitive disabilities face widespread stigma, especially when it comes to parenting, decision-making capacity, and reproductive interests. Child protection workers often assume these individuals are unfit to raise children, leading to discrimination in custody cases and limited access to health resources and social support. Additionally, many professionals, including clinicians and social workers, lack the training and time to help these patients understand their medical condition and treatment options, resulting in uninformed decisions and unaddressed needs. Disabled individuals are also stereotyped as uninterested in starting families and are often treated like children when making decisions regarding reproduction and parenthood. These views result in limited access to healthcare and support services. 

The Question of Reproductive Rights:

According to the value of autonomy, individuals have the right to make decisions about their bodies and parenthood and should not be denied the right to have children, as this would violate their reproductive freedoms. Article 23 of the Convention on the Rights of Persons with Disabilities (CRPD) states that “the right of all persons with disabilities who are of marriageable age to marry and to found a family on the basis of free and full consent of the intending spouses is recognized; to decide freely and responsibly on the number and spacing of their children and to have access to age-appropriate information, reproductive and family planning education are recognized, and the means necessary to enable them to exercise these rights are provided; Persons with disabilities, including children, retain their fertility on an equal basis with others” (United Nations). Additionally, women, in particular, desired romantic relationships, as having a partner or starting their own family gave them a sense of normalcy and made them feel like members of society (Pérez-Curiel). 

While the document above argues that individuals with intellectual disabilities have the right to reproduce, there are nuances to consider within that claim. Cognitive disabilities vary widely in severity, so determining whether or not an individual has the right to autonomy must be evaluated on a case-by-case basis. For example, if an individual has a mild cognitive disability and can live independently with minimal support, then they might be capable of making reproductive decisions, so denying them this right would violate their bodily autonomy.  On the other hand, individuals with more severe symptoms who cannot fully understand the consequences of parenthood or require full-time support may not have the ability to decide whether to have children, as they might lack the capacity to make informed decisions. Furthermore, since cognitive disabilities include a wide variety of mental disorders, each with its own spectrum, it is inaccurate to generalize that all individuals do or do not have the right to make their own reproductive decisions, as it varies case-by-case depending on the specific needs, abilities, and level of independence for each individual.

However, does society have the right to intervene if an individual’s cognitive disabilities impair their ability to fulfill their parental responsibilities? When an individual has limited decision-making capacity, it may be best to have a proxy make decisions on their behalf, especially in situations where they cannot comprehend the long-term consequences, like becoming a parent. If they lack the necessary ability to make an informed decision, such as fully understanding their situation and its possible outcomes, reasoning through their options, and, if they can, communicating their wishes, they do not meet the criteria for exercising autonomy (American Family Physician). These restrictions prevent them from making choices they would not otherwise make if they had decision-making capacity. In such cases, it’s important to have supported decision-making, which provides individuals with intellectual disabilities the tools to make informed decisions. While they may need assistance making decisions about health care, relationships, financial matters, etc, they do not need a guardian to make these decisions for them. As a society, rather than denying an individual’s decision-making ability, we should focus on empowering, educating, and supporting them to make these informed decisions. 

Additionally, there’s often a hidden assumption that cognitive disability is inherently negative, and therefore, individuals who have a high risk of passing on their genetic condition to their child should be restricted from having children. However, this oversimplifies the issue, as having a genetically inherited cognitive impairment does not mean an individual is incapable of exercising their fundamental rights, as cognitive disabilities exist on such a broad spectrum. There are inevitably many cognitively disabled individuals who live more fulfilling lives than some people without any disability.  

On the other hand, excessive intervention in reproductive choices could violate the rights of individuals with cognitive disabilities to make informed decisions about their reproductive health, even if they might have difficulties understanding the consequences of some of their choices. This raises a fundamental dilemma between the autonomy of disabled individuals over their bodies and lives and the responsibility of society or caregivers to safeguard these individuals from harm. Thus, while protection is often seen as necessary for ensuring safety and preventing harm, excessive restrictions can deprive individuals with cognitive impairments of their rights. This may result in parents or social workers making decisions on behalf of these patients regarding birth control, sexual activity, relationships, or even sterilization. Thus, society must learn to respect the autonomy of these individuals while also providing appropriate support and protection, enabling them to make well-informed decisions.

To further explore these nuances, let’s transition into a case study that highlights the idea that individuals who cannot care for themselves should not have children. (Note that schizophrenia is not considered an intellectual disability in this paper). Ann Brown is a twenty-seven-year-old woman with chronic paranoid schizophrenia. She is now twelve weeks pregnant and has indicated her desire to continue her pregnancy several times. Abortion, she says, “is against my principles.” Ann’s mother, on the other hand, wants her to have an abortion, as she is unable to care for the child and worries that Ann will experience further distress if she is forced to give up the child, given the slim likelihood that she would be allowed to keep it. Should abortion be pursued? (The Hastings Center). Virginia Abernethy, a Professor Emerita at Vanderbilt University School of Medicine, argues that Ann’s right to have children should be limited due to her inability to take responsibility for the child. If Ann cannot raise her child, she should not have the right to give birth. Since society ultimately bears the burden of caring for the child through foster care, society should have a say in whether or not abortion should be pursued (Abernethy). “A well-functioning, stable society matches every right to a responsibility… Since children are thought to create a responsibility, perhaps there should not be a right to procreate by those unable to assume that responsibility… Ann’s right to procreate ends when the responsibility to raise her child becomes society’s” (Abernethy). Although Ann’s decision to refuse abortion is legally protected because she is a mentally competent individual (schizophrenia is not conclusive evidence of incompetence to refuse a medical procedure), it results in a challenging situation, as Ann gives birth to a child she and her mother both cannot care for. This places an additional burden on society to increase its already limited resources to support these individuals. Thus, Abernethy argues that individuals who lack the capacity to raise a child should not have the right to reproduce and that state intervention may be necessary (Abernethy). 

This section explores the ethical question of whether society has the right to limit an individual's reproductive freedom. While disability alone does not justify the denial of that right, society may intervene in cases where a parent lacks the decision-making capacity to make informed decisions. Some argue that those who cannot take care of themselves should not have the right to reproduce, as the burden of raising the child often falls on society. However, others caution against excessive intervention, claiming that it can violate the rights of disabled individuals, especially when decisions are made without proper support. 

Fairness in Exercising Parenting Rights:

While individuals with cognitive disabilities may face greater parenting challenges, this does not justify holding them to a higher standard than non-disabled parents when assessing their ability to parent. However, this is not the case in many situations, as there is a stigma around sexuality and parenthood for individuals with intellectual disabilities. Thus, they are at a greater risk of losing custody of their children, as social workers often assume—even without evidence—that they are incapable of adequately caring for their children. This was evident in the Oregon case, where the state child welfare agency placed the children up for adoption based on minor parenting criticisms and deficiencies. These prejudiced views towards individuals with intellectual disabilities can be attributed to the history of forced sterilization, a practice rooted in the eugenics movement. 

However, one reason why parents sought to sterilize their children was to protect them from getting raped or taken advantage of sexually. Sterilization is a permanent form of birth control that prevents an individual from reproducing and becoming pregnant. One study found that people with intellectual disability are nearly seven times more likely to be victims of sexual assault than those without disabilities (Shapiro). Parents wanted their children to be in relationships without the burden of bearing a child, as they were worried about their child’s ability to raise a child independently if their partner were to leave. Childless relationships would have also protected their children from emotional, financial, and physical challenges and relieved parents of the full responsibility of raising the future child.

Individuals advocating for sterilization for women with intellectual disabilities argued that “sterilization eliminate[s] the risk of having a child that the patient could not care for, imposing additional responsibility on the patient’s caregivers. A neurologist supported sterilization, saying, ‘You don’t want to add something nobody can take care of’” (Agaronnik). While some parents may have acted in their child’s best interest, these views still persist in our society, as forced sterilization was a widely accepted and unquestioned practice for decades, which contributes to the stigmatized attitudes towards these individuals when they pursue parenthood. 

However, fairness raises a broader issue when discussing responsibility. Since parents with cognitive disabilities may face challenges in assuming the same responsibilities as non-disabled parents, is it fair for the child to be raised in such a family? Newborns of parents with intellectual disabilities are often at a higher risk of experiencing poor developmental outcomes, including low birth weight, mental health problems, and school dropout (Zijlstra). These risks are not directly due to unsafe parenting or the disability itself but because of the challenges these parents often face. However, with the appropriate, individualized support, studies have shown that these individuals can successfully raise their children, highlighting the importance of social support in promoting family stability and a child’s well-being (Zijlstra).

Furthermore, although parents with intellectual disabilities may love their children and try to provide as much care as possible, they may face challenges inherent to cognitive disorders, including impaired judgment as well as communication and comprehension difficulties that can affect their parenting capabilities. For example, a 9-month-old girl had a history of pneumonia, frequent vomiting, and developmental delay for 2 months. She weighed only 4.6 kg, measured 60 cm in height, and had reduced muscle mass. However, her parents had failed to attend follow-up sessions and adhere to the prescribed treatment. Her father was illiterate with a learning disability, while her mother had a mental illness of between seven and nine years and was currently under psychiatric care. The couple’s first child was a 3-year-old boy who had been in his uncle’s custody from 2 to 6 months due to the harm inflicted by his mother. Since 6 months of age, he has been under his parents’ care with additional supervision from extended family. During a clinical follow-up after her hospital discharge, the child protection agency took her away from her mother’s care after they received a report that the mother was attempting to harm the child. The child was then placed under the custody of her father with additional supervision from her uncle. Following this change, the girl showed significant improvements in her health. At 15 months of age, she was returned to the care of both of her parents with additional support from her uncle (Abu Bakar). 

Although the child exhibited poor weight gain during the first 6 months, no interventions were scheduled to support the mother, like implementing a proper feeding plan (Abu Bakar). The mother’s inability to recognize and understand feeding cues highlights her strong dependence on social workers for guidance. Thus, it is essential to train and equip these workers with the knowledge and skills to effectively support parents with intellectual disabilities and the unique challenges they face. Again, this case shows how critical social support networks are, especially for parents with intellectual disabilities. Combating child neglect requires collaboration between professionals from various disciplines and the patient’s family, ensuring that the child’s safety, emotional well-being, and long-term developmental needs are met through consistent communication, coordinated care, and shared responsibility. 

Additionally, this raises the question of whether parents without cognitive disabilities who also fail to attend follow-up appointments or follow prescribed treatment should have their right to parenthood questioned as well. This is an interesting idea, as it ties to the broader question of whether parenthood is a right or a privilege and who gets to decide—and based on what criteria—whether someone can become a parent. It also highlights the double standard in how society judges disabled vs. non-disabled individuals when it comes to parenthood. Since non-disabled parents are not deprived of their rights for failing to attend follow-up sessions or adhering to prescribed treatment, so it’s unfair to hold parents with cognitive disabilities to a stricter standard. This contradiction reveals a deeper societal bias: while mistakes by non-disabled parents are seen as “understandable,” the same mistakes made by disabled parents are treated as evidence that they are unfit to raise a child. If non-disabled parents can make mistakes without having their parental rights taken away, then why can’t parents with cognitive disabilities be given the same leniency? 

Thus, this question underscores society’s inherent bias against individuals with disabilities pursuing parenthood and the unfair double standards used to assess whether they are capable of being parents. Hence, even if social support and programs improve, parents with intellectual disabilities, in particular, will continue to face challenges in meeting their children’s needs due to societal pressure and stigma. 

However, focusing on the parents as the primary stakeholders in this case raises several ethical questions: Is it fair for parents to bear so much of the burden, almost like they are the parents responsible for raising the child? Should they have a say in whether their children should become parents or not? For example, in the Oregon case, Raymond Fabrrini, Amy’s dad, held strong feelings about her abilities: “She doesn't have the instincts to be a mother” (Swindler). Amy had been primarily home-schooled, and he was often frustrated with her, often calling her a lazy child. He also urged her to put Christopher, her first son, up for adoption. Although Amy and her husband brought Christopher home, within days, her father alerted the state about his concerns regarding Amy’s limited ability to care for her son (Swindler). One of the reasons Amy and Eric had their sons taken away was due to the lack of support from Amy’s father, who strongly opposed her decision to have a child. His disapproval highlighted her inability to provide adequate care, which led to state intervention. Instead of providing support as Patti did when Lisa had her child, Amy’s father expressed criticism, which resulted in Christopher being placed in foster care. This lack of familial support not only increased scrutiny from the state and child welfare services but also overwhelmed both Amy and her husband with stress, ultimately causing the case to go to court. Looking at it from another perspective, however, state intervention ensures that reproductive choices are not dependent on other people, like parents or caregivers, who might be biased. 

Ultimately, an individual's right to have children depends on the degree of their disability and the extent to which the intended parents rely on their families. Suppose they require substantial support due to their cognitive impairments, depend on their parents 24/7, and cannot take care of themselves. In this case, it may be better to reconsider having a child rather than placing an additional burden on the family or the patient’s caregivers. While social support systems can be beneficial, their practicality is questionable since the needs of people with disabilities are diverse and specific, which makes it difficult to provide effective, personalized support (we’ll explore this idea later). For instance, an OB/GYN specialist highlighted the challenges of caring for pregnant women with disabilities who depend on their parents for support: “Sometimes they have requests that you cannot fulfill because it’s not in their best interest. For example, I have had patients who are dependent on their own parents who are coming in because they want children, and they can’t take care of themselves. But they want to bring a child into the world, and they have 65-year-old parents taking care of them. And it puts me in a difficult situation, because you don’t need a license to reproduce but you do need a license to practice medicine” (Agaronnik). This highlights a fundamental issue where reproductive decisions are being outsourced to clinicians who lack a close relationship with the patient, which can lead to biased or uninformed judgments. 

Another OB/GYN specialist stated that “[when] your intrinsic IQ is 50 or 60, you don’t have the intellectual ability to take care of anybody, let alone yourself or let alone anybody else” (Agaronnik). However, as previously mentioned, it is surprising that IQ scores are used to assess whether an individual is capable of parenting, especially given its origins in eugenics. This suggests that the OB/GYN’s views may have been influenced by a personal bias rather than an objective judgment of the individual. Thus, it becomes crucial that these individuals are given comprehensive information about their reproductive choices so they can fully exercise their reproductive rights and freedoms.

In this section, we have explored how people with disabilities are often held to stricter parenting standards than non-disabled individuals and are frequently assumed to be incapable of raising a child, which puts them at greater risk of losing custody of their child. The history of forced sterilization of these individuals, driven by societal pressures or parents seeking to avoid the financial and physical burdens of raising a child, contributes to the biases held against these individuals. Moreover, when an individual desires to have children but requires constant care and supervision, parents and caregivers often worry about the long-term challenges of caring for a child. Many professionals also argue that it is unfair to let the responsibility of raising the child fall on the individual’s parents. In such cases, it may be better to reconsider parenthood than to place an additional strain on their families and society. 

Conclusion:

In this paper, I’ve discussed how the social model fails to meet the needs of individuals with cognitive disabilities and examined values such as reproductive rights, paternalism, and fairness when considering whether society should support these individuals in becoming parents. While the value of autonomy rights affirms that individuals with disabilities have the right to make decisions about their bodies, society has a responsibility to intervene when doing so can prevent harm to the individual or the child. At the same time, avoiding excessive intervention is crucial, highlighting the importance of social workers in providing appropriate support to enable these individuals to make informed decisions. Although people with disabilities should not be held to a higher standard than non-disabled parents based on the principle of fairness, is it fair for a child to grow up in a household where their parents may encounter unique challenges, like sudden episodes or difficulty communicating? Likewise, is it fair for the parents of disabled individuals to bear the burden of raising a child? In the end, I believe the decision depends on the degree of the disability and the level of assistance the individual requires. If the individual cannot take care of themselves at all due to their impairment, it may be better not to have a child than to place a significant burden on close family members. 

Another concept that is particularly relevant to my paper is the idea of equality vs. equity: Should parents with disabilities have equal or even greater access to resources and support systems? Equality says that parents with disabilities should receive the same level of support and resources as non-disabled parents. However, equity says that parents with disabilities face challenges inherent in cognitive impairments, which justify additional support and preferential access to resources. However, some might argue that choosing to become a parent comes with its responsibilities and consequences. If an individual struggles to care for themselves, how can they care for their children? Even if they can take care of themselves, their impairments might still hinder their ability to meet their child’s needs, impacting the child's overall well-being.

Furthermore, there are several instances where I mention the importance of social support for people with disabilities, but the key question is: how do we improve the current system so that it is accessible and effective for everyone? Although various programs have been implemented, many studies suggest that their effectiveness is limited. This highlights a deeper issue—it’s not just about having programs but ones that are adequately funded and tailored to the needs of these individuals. While progress has been made, there is still room for improvement. In our discussion of support systems, a central question still remains: what specific, concrete steps can we take to ensure they receive the support they need? One place to start is by investing in personalized support services and training social workers to understand—and meet—the unique needs of each individual. Since many studies have noted that the existing systems are not effective for everyone, as people with disabilities are not a homogenous group, individualized support is crucial in protecting their reproductive rights and autonomy. Additionally, regular evaluation should be implemented to ensure that these systems remain effective and beneficial for all. Despite the challenges we have faced in providing support to these individuals, the progress made thus far offers hope for the future, sparking the continuation of a much-needed societal discussion about the importance of not denying an individual’s reproductive freedom and autonomy based solely on their disability.

Works Cited 

Abu Bakar, Atirah Az-Zahrah et al. "A Case Report of Failure to Thrive Caused by Parental Intellectual Disability: The Invisible Population." Korean journal of family medicine vol. 42,5 (2021): 403-406. doi:10.4082/kjfm.20.0063 

Agaronnik, Nicole et al. "Ensuring the Reproductive Rights of Women with Intellectual Disability." Journal of intellectual & developmental disability vol. 45,4 (2020): 365-376. doi:10.3109/13668250.2020.1762383 

"Article 23 – Respect for home and the family." United Nations | Department of Economic and Social Affairs Disability, www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disa bilities/article-23-respect-for-home-and-the-family.html. Accessed 15 May 2025.

Bradbury-Jones, Caroline et al. "Priorities and strategies for improving disabled women's access to maternity services when they are affected by domestic abuse: a multi-method study using concept maps." BMC pregnancy and childbirth vol. 15 350. 28 Dec. 2015, doi:10.1186/s12884-015-0786-7 

Gudkova, Tatiana et al. "Supporting children of parents with intellectual disability: A scoping review." Journal of applied research in intellectual disabilities : JARID vol. 32,4 (2019): 737-749. doi:10.1111/jar.12573 

"Individuals with Disabilities Education Act." National Center for Learning Disabilities, ncld.org/understand-the-issues/learn-the-law/individuals-with-disabilities-education-act/. Accessed 15 May 2025. 

"Individuals with Disabilities Education Act (IDEA)." U.S. Department of Education, www.ed.gov/laws-and-policy/individuals-disabilities/idea. Accessed 15 May 2025.

"Individuals with Disabilities Education Act (1975)." Embryo Project Encyclopedia, embryo.asu.edu/pages/individuals-disabilities-education-act-1975. Accessed 15 May 2025. 

"Introduction to the Americans with Disabilities Act." U.S. Department of Justice Civil Rights Division, www.ada.gov/topics/intro-to-ada/. Accessed 15 May 2025. 

"IQ costs Oregon parents their kids, but is that fair?" The Oregonian, 

www.oregonlive.com/pacific-northwest-news/2017/07/parents_with_intellectual_disa.ht ml. Accessed 15 May 2025. 

"Judge determines couple with low IQs can parent both their boys." The Oregonian, www.oregonlive.com/pacific-northwest-news/2018/01/judge_determines_couple_with_l. html#:~:text=Four%20years%20after%20their%20son,can%20parent%20both%20their% 20boys. Accessed 15 May 2025. 

"Judge rules Oregon parents with low IQs can take youngest son home." The Oregonian, www.oregonlive.com/pacific-northwest-news/2017/12/judge_rules_oregon_parents_wit.h tml. 

Kandel, Isack et al. "Intellectual disability and parenthood." TheScientificWorldJournal vol. 5 (2005): 50-7. doi:10.1100/tsw.2005.12 

Keighley, Leticia. "An Unexpected Motherhood." The Journal of Down Syndrome Australia, Mar. 2016. 

Lee, Kira et al. "Sexual and reproductive health services for women with disability: a qualitative study with service providers in the Philippines." BMC women's health vol. 15 87. 15 Oct. 2015, doi:10.1186/s12905-015-0244-8

Mahowald, M, and V Abernethy. "When a mentally ill woman refuses abortion." The Hastings Center report vol. 15,2 (1985): 22-3. 

"Oregon Couple Deemed Unfit Parents Due to Their Low IQs Regain Custody of Kids." Inside Edition, www.insideedition.com/oregon-couple-deemed-unfit-parents-due-their-low-iqs-regain-cu stody-kids-40036. Accessed 15 May 2025. 

Pérez-Curiel, Patricia et al. "The Right to Sexuality, Reproductive Health, and Found a Family for People with Intellectual Disability: A Systematic Review." International journal of environmental research and public health vol. 20,2 1587. 15 Jan. 2023, 

doi:10.3390/ijerph20021587 

Rothler, Roni. "Disability rights, reproductive technology, and parenthood: unrealised opportunities." Reproductive health matters vol. 25,50 (2017): 104-113. 

doi:10.1080/09688080.2017.1330105 

"The Sexual Assault Epidemic No One Talks About." NPR, 

www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about. Accessed 15 May 2025. 

"The Social Model of Disability Explained." Social Creatures, 

www.thesocialcreatures.org/thecreaturetimes/the-social-model-of-disability. Accessed 15 May 2025. 

Tahir, Munazza, and Virginie Cobigo. "'I Don't Think I Have Ever Worked Harder on a Case': Needs of Canadian Child Protection Workers and Parents With Intellectual Disabilities." Journal of applied research in intellectual disabilities : JARID vol. 38,1 (2025): e70006. doi:10.1111/jar.70006

Zijlstra, Annick et al. "Expectant parents with intellectual disabilities in child protection: Risk factors for child safety." Journal of applied research in intellectual disabilities : JARID vol. 37,3 (2024): e13230. doi:10.1111/jar.13230