Summary: The following article analyzes, from an anthropological and sociological perspective, the intersection between parenthood, sexuality and disability as sociocultural constructs that have changed throughout history, as well as the ways in which they have been subject to discourses of power and oppression in relation to the right to freely exercise sexuality, reproductive rights, and the decision to become parents. First, it examines how the autonomy of persons with disabilities to freely exercise their sexuality has been limited by paternalistic approaches and by assumptions of asexuality. It then analyzes why biomedical and State approaches developed eugenic practices and perspectives aimed at preventing the reproduction of persons with disabilities, both historically and in the present. Finally, it examines how biomedical and State discourse, against a moral and ethical backdrop, has reinforced negative views of the decision of persons with disabilities to become parents. This article was prepared through a literature review of anthropological and sociological scholarship on disability.
Keywords: Fatherhood, motherhood, reproduction, sexuality, persons with disabilities, social construction, biomedical discourse.
1. Introduction and theoretical framework.
Disability is a subject that is rarely discussed in the country, both in public and academic spheres, and even less attention is paid to the intersection of gender, sexuality and disability. Several articles written by persons with disabilities include testimonies about being perceived as asexual, rendering their bodily and sensory experiences invisible. Alongside this, they are also seen as unable to procreate; biomedicine may even recommend that they not start a family. For this reason, I believe it is necessary to make visible a topic that is considered taboo and that can also challenge stereotypes and approaches toward persons with disabilities that are sometimes characterized by paternalism or infantilization.
The social sciences, and anthropology in particular, allow us to adopt a critical and reflective view of reality, thereby denaturalizing concepts that have been regarded as universal and unchanging throughout history, such as parenthood, sexuality and disability in this case. This perspective enables us to see the complexity and diversity that a situation or concept can have in people’s lived experiences. Discussion of this subject also proposes a critical view of biomedical discourse, which is present both institutionally and in everyday life and continues to propose eugenic measures toward persons with disabilities, depriving them of the freedom to decide about their own bodies. Accordingly, the central objective of this article is to analyze, from an anthropological and social perspective, different approaches to the right to decide to become parents and its intersection with sexuality and reproductive rights among persons with disabilities.
As a brief introduction to this article, it is useful to explain why fatherhood, motherhood, sexuality and disability are social constructs rather than fixed or natural categories. First, according to Royo Prieto (2011), both fatherhood and motherhood are social and symbolic constructs. This means that they can acquire different meanings depending on the sociocultural and historical context in which they occur and because they are also linked to gender roles such as masculinity and femininity. In the Western context, motherhood has historically been configured more as a natural attribute of the female role linked to the domestic sphere and child-rearing, whereas fatherhood has been associated more closely with voluntariness and a moral value attached to the male role (2011: 28–30).
To address the experience of procreation and having children, sexuality must also be discussed as a social construct, because the sociocultural context itself leads individuals to assign meaning and value to their conduct, practices, duties, pleasures, feelings and sensations (Higueras, 2010). Thus, sexuality refers not only to biological and physical notions such as sexual organs or sexual relations, but is also related to gender, sexual orientation and the different lived experiences surrounding all of these socially and culturally configured concepts. From a Foucauldian perspective, sexuality also emerges through discursive practices of power in which exclusions, limitations, values, freedoms and transgressions are deployed and defined (Foucault, 2004). In this sense, for Foucault (2003), biomedicine, as a legitimized strategy of knowledge and power, can define which sexual behaviors are considered normal or abnormal and also where, when and how sexuality may be discussed.
The conceptualization of disability and its different forms—visual, physical, hearing, speech, intellectual, psychosocial, among others—is also socially constructed, because its meanings and assessments have changed historically and culturally. Agustina Palacios (2008) notes that disability has been defined over time through several models: the dispensability model, in which disability was understood as divine punishment from a religious perspective, and the rehabilitation model, in which it was conceived as an illness that had to be “normalized” from a biomedical perspective. Today, a social approach is more prominent, under which disability is not configured by individual limitations but by the limitations imposed by society when it fails to provide services appropriate to the needs of persons with different types of disabilities. As a result, they are excluded and rendered invisible in different areas of society (Palacios, 2008), including daily mobility, education, interpersonal interactions and access to employment. In this sense, society often fails to facilitate the participation, independent living and personal fulfillment of persons with disabilities.
According to the Convention on the Rights of Persons with Disabilities adopted by the United Nations in 2006, the right to an active sexual life is recognized, as is the need to end any form of discrimination against persons with disabilities concerning marriage, family, fatherhood and motherhood. This includes recognition of the right to marry, to decide freely on the number of children they wish to have, to raise them and not have children separated from parents with disabilities, to retain fertility, and to have access to the services and means needed to exercise these rights (Etxeberría, 2012). However, despite the recognition of these principles and rights, everyday realities and discourses may differ: the exercise of these rights can be limited or unrecognized, and many countries do not provide the necessary services.
The article is structured as follows. First, it discusses different perspectives that have been adopted regarding sexuality and disability. It then analyzes biomedical discourse on “restricted reproduction” among persons with disabilities, and finally discusses the experience and decision of becoming a parent among persons with disabilities. The methodology consists of a literature review of academic research from Disability Studies, Anthropology, Sociology, Philosophy and other fields. The article also includes examples from case studies and ethnographic research. It should be emphasized that this article is an introduction to a theoretical discussion of a subject that has received limited attention and draws together the perspectives of several authors. In this sense, it opens the way for future research seeking to collect testimonies from persons with disabilities.
2. Perspectives on sexuality and disability.
Gill states that the biomedical approach has maintained a paternalistic and condescending view of the exercise of sexuality by persons with disabilities, attempting either to adapt disability to prevailing ideas of sexuality or to make it entirely invisible (2014: 6). Shildrick (2009) notes that the intersection of disability and sexuality has often been characterized by positions that appear ambivalent and contradictory at the same time, whether held by biomedical authorities or by direct caregivers of persons with disabilities: on the one hand, they become protectors and defend persons with disabilities because the latter are statistically more vulnerable to sexual abuse; on the other hand, this protection can approach paternalism and infantilization, limiting the autonomy of persons with disabilities over their own bodies.
To discuss reproduction, the decision to procreate, and becoming parents, I would like to focus first on how persons with disabilities have been restricted in exercising their sexuality by different discourses present in society. Shildrick (2009: 81) refers to a “Western discomfort” with manifestations of desire and erotic pleasure in bodies that are culturally and socially regarded as “abnormal” from a biomedical perspective on sexual agency. The author gives as examples the denial and prohibition of sexuality in childhood and discomfort with sexuality in old age, while the young adult body is treated as normative in sexual experience. The bodies of persons with disabilities are even more unsettling to this framework because they become a radical representation of “abnormality” and resistance to bodies considered ideal and normal.
Gill (2014) notes that the “myth of asexuality” is common in understandings of persons with disabilities and that sexuality—and asexuality—can become a form of oppression and discrimination. It is generally much easier to discuss accessibility and inclusion in areas such as education or employment, while sexuality, reproduction and parenthood among persons with disabilities receive much less attention. The author also points out, however, that “being sexual” is neither central nor essential to being human, because some people can live fulfilling lives without sexual activity. Although asexuality should be recognized as a valid sexual orientation for both persons with and without disabilities (Kim, 2011), there is a greater tendency to assume and impose asexuality on persons with disabilities. Siebers (2008) further notes that when asexuality is assumed in persons with disabilities—especially persons with intellectual or physical disabilities—intrusions into their privacy may be treated as benign because of household adaptations or the assistance of others. This can prevent the free exercise of possible sexuality, whether through masturbation or sexual relations with other people.
Siebers (2008) states that persons with disabilities explore an “alternative” sexuality insofar as they are not initially seen as sexually capable or “normal.” Disability is a bodily experience that also encompasses activities and pleasures in the sexual sphere. Shildrick (2009) explains that this bodily experience, differentiated from what is considered a “normal” or “ideal” body, can generate diverse possibilities and strategies for expression and connection in the sexual experiences of persons with disabilities. However, this autonomy and freedom to explore non-normative sexuality in relation to identity or pleasure can be limited by control over the body imposed by biomedical approaches and by State perspectives when sexuality is linked to reproductive capacity.
3. “Restricted” reproduction in biomedical and institutional discourse.
Siebers (2008) notes that the sexual lives of persons with disabilities are constantly placed in tension with reproduction and the ability to reproduce. In discussions of disability and sexuality, a biomedical approach characterized by rehabilitation or normalization tends to predominate. Disability is conceived as sexually limited, particularly in relation to reproductive capacity (Gill, 2014). Reproductive decisions are often made not by the people living the experience themselves, but by guardians, caregivers or health professionals who manage the reproductive health of persons with disabilities, frequently without their consent, including through contraceptive prescriptions and forced sterilizations (2014: 122).
Procreation by persons with disabilities is often viewed as a “burden” on the family and also from the institutional perspective of social and health policies, because it is frequently assumed that their children will also be born with a disability and that the parents, who may themselves depend on others, will be unable to support them socially and economically (Carey, 2009). In this sense, there is also a very thin line—and a discursive concealment—between the free exercise of sexuality by persons with disabilities and restrictions on reproductive capacity and the right to become parents.
Dorothy Roberts (2009) notes that at different historical periods and in various countries, persons with disabilities have been subjected by State institutions to eugenic control of reproduction through sterilization or invasive contraceptive methods without their consent. Similar practices were also imposed on poor people, immigrants and people regarded as racially inferior. The purpose, she explains, was to reduce the likelihood of children later requiring State guardianship or custody and thereby to avoid additional public expenditure. Although State eugenic practices of this kind would be condemned today, this does not mean that eugenic discourse or perspectives have disappeared from individuals or the private sphere.
Forced sterilization of persons with disabilities has also been presented as a strategy to allow them to engage in sexual activity. Desjardins (2012) studied negotiations by parents of children with intellectual disabilities concerning forced sterilization in Quebec. The researcher explains that, in the imagination of many parents, remaining “sexual” also involved a constant “threat” of reproduction. Many parents therefore conceived forced sterilization as a way of “freeing” their sons and daughters from the threatening ability to reproduce so that they could express themselves sexually and genitally in a supposedly safe way. Desjardins notes that this method produces another form of sexuality called “special sexuality” or “adapted sexuality,” once again conceiving the individual with a disability as the person who must change or be normalized rather than society.
Even today, although physicians and people in a person’s environment may not expressly prohibit reproduction by a person with a disability, they often “do not recommend” having children. According to Watson (2007), reproductive rights require discussion of how to guarantee the potential of all people, with or without disabilities, to exercise the desire to reproduce as well as the desire not to reproduce, beyond what society considers “normal” or “abnormal.”
4. Fatherhood and motherhood in the context of disability.
Biomedical and State approaches are characterized by making many decisions and taking actions on behalf of persons with disabilities, completely rendering their agency or voice invisible in the exercise of fatherhood and motherhood (Gill, 2014), while reinforcing stereotypes and social images of persons with disabilities as burdens or harms to society. Parish (2002) notes that it is often assumed that persons with disabilities performing these roles will involve domestic abuse, poverty and inadequate social support in raising children. Gill (2014) also notes that disability itself—without considering the social impact of discrimination and exclusion—is often assumed to undermine a person’s overall well-being.
Gill (2014) notes that biomedical and State discourse generally attaches an ethical and moral dimension to the decision of persons with disabilities to become parents, such that they are conceived as lacking parental capacity or as “bad parents” if they choose to have children. For example, the children of persons with disabilities are often seen as needing protection from their parents’ supposedly “selfish” reproductive desires, while the parents’ reproductive capacity and desire are treated as a whim, a failure to recognize their alleged parental incapacity, and an act of irresponsibility.
It should be emphasized that the debate about parenthood and disability places greater focus on the experiences of persons with intellectual disabilities because the decision to become parents is viewed as more controversial and uncertain. Sexuality and reproductive capacity among persons with intellectual disabilities are constantly placed in tension because they are assumed to be unable to express consent (Gill, 2014). Desjardins (2012), for example, in a study of parents and children with intellectual disabilities, argues that the discourse of “liberating” persons with intellectual disabilities to reproduce completely conceals and renders invisible the individual agency they may have over themselves. Etxeberría (2012) repeatedly notes that the services and means society should provide so that persons with disabilities can freely exercise fatherhood and motherhood should also include information about possible physiological risks for both parents and children in making this decision, including pregnancy and childbirth, as well as the responsibilities involved in having children.
Likewise, most of the articles and research consulted placed much greater emphasis on the experiences of women with disabilities and motherhood. Höglund and Larsson (2012), for example, in their study of the experiences of mothers with intellectual disabilities in Sweden, emphasize the specifically female experiences involved in having children, including pregnancy, childbirth and forms of postnatal care exclusive to women such as breastfeeding. Malacrida (2009) notes that society generally expects women to fulfill certain norms and roles of femininity, which also include motherhood. For women with disabilities, however, this can create tension because they do not fit the ideal of motherhood: they may be perceived as asexual, regarded as inappropriate for the role because of the type of disability they have, or even viewed as a risk to the child.
5. Conclusions.
This article has examined how the decision to become a parent in the context of disability is configured through its intersection with other social constructs such as sexuality and reproduction. It began by emphasizing the importance of recognizing the historical and sociocultural context of concepts such as disability, sexuality, motherhood and fatherhood in order to understand that they are not natural and universal categories in our society. It also highlighted the presence of discourses of power that are more legitimized than others, such as biomedicine and the State institutional context, which seek to control, manage and “normalize” disability by conceiving it as an abject condition or as a barrier to social development.
First, the article showed how the exercise of sexuality has been limited by paternalistic and infantilizing perspectives that deny sexuality to persons with disabilities because their bodies are viewed as abnormal in contrast with the young adult body perceived as ideal. This gives rise to the “myth of asexuality,” in which asexuality is assumed to be a common sexual orientation among persons with disabilities, rendering invisible their capacity to experience desire or pleasure and to express sexual and gender identities through their bodies.
The article then examined how sexuality comes into tension with the reproductive capacity and potential of persons with disabilities. Throughout history, biomedical discourse and different State approaches developed controlling eugenic practices aimed at preventing reproduction so that resources would not be invested in people regarded as a “burden” on the State. More socially accepted practices with eugenic dimensions continue today and are sometimes presented as “liberating” for sexual activity, including forced sterilization or recommendations not to have children. These practices likewise constitute violations and forms of oppression of the right to freely exercise reproductive capacity.
Finally, the article examined how, specifically in the exercise of parental roles by persons with disabilities, various negative assumptions have been made about their alleged inability to raise children, while stereotypes and images of disability as harmful to society have been reinforced. Biomedical and State approaches have therefore attached moral and ethical judgments to the decision to become parents, portraying persons with disabilities as selfish or irresponsible when they decide to have children, on the assumption that they will be unable to raise them or that the children will also be born with a disability. Particular attention was also given to studies on parenthood and intellectual disability and to the intersection between motherhood and women with disabilities.
Throughout the article, biomedical discourse—present among medical authorities, caregivers and relatives—as well as institutional discourse surrounding social and public policies has been shown to impose limitations on the exercise of a full sexual life and on the decision of persons with disabilities to become parents. Such limitations may arise by assuming, generalizing and imposing certain characteristics on the sexual experiences or parental roles of persons with disabilities in ways that justify eugenic and paternalistic perspectives. This also oppresses and renders invisible the autonomy and independence that persons with disabilities can exercise over their own bodies. In this regard, as Lennard Davis argues, disability is not only the limitations and exclusions that society imposes on a certain group of people; it is also “a disruption in the sensory field of the observer” (2002: 50). Sexuality, reproductive capacity and parenthood among persons with disabilities therefore constitute forms of resistance to what biomedical and State discourses conceive and impose as normal or ideal.
Future research should include in-depth interviews and ethnographic observation of the everyday lives of people who experience disability, as this would make it possible to examine disability-related issues more deeply and broadly from people’s own experiences. Such work could also focus specifically on motherhood and its relationship with femininity among women with disabilities, as well as fatherhood and its relationship with masculinity.
Finally, this article invites reflection on the task of ensuring universal access and inclusion for persons with disabilities and providing the means for them to exercise their rights freely. Inclusive education should also include sexuality education that enables persons with disabilities to exercise their sexuality freely, know their bodies and their rights, and ensures that persons without disabilities respect that exercise. Sexuality education should also recognize and make visible reproductive rights so that people can freely exercise the desire—or absence of desire—to reproduce. Similarly, inclusive sexuality education should address the right to become parents, providing persons with disabilities, as well as persons without disabilities, with information about the physiological implications of parenthood and the responsibilities involved in assuming that role.
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