Disability, Rights, and Sexuality. The Urgency of Closing the Inequality Gaps

WHAT IS DISABILITY?
Defining the concept of disability remains an ongoing process and a multidisciplinary topic that has generated extensive debate. Simply referring to the etymology of the word is insufficient. While the prefix “dis” refers to a person’s lack of ability to perform a certain activity, current perspectives encourage us to look beyond the individual living with a physical, sensory, or cognitive condition, and maintain that disability is a social construct. To fully understand the current definition, it is necessary to describe the paradigms from which this notion has been transformed.

The literature on this subject often uses terms such as “paradigms,” “approaches,” “models,” and “submodels” interchangeably to classify ways of addressing disability. To clarify this conflation, Díaz Velázquez (2009) and Jiménez Lara (2007) propose that it is more appropriate to understand paradigms as sets of scientific approaches that provide models to explain a reality. A model is then understood as an abstraction designed to comprehend a phenomenon, describe its fundamental characteristics, and detail its significant relationships. In this sense, models are derived from each paradigm, and different models can coexist within the same paradigm.

Trust (2024)
Picture: Alberto Isaac López Díaz González (Asombraluz)

Understanding the assumptions of each paradigm is not only theoretically relevant, but also allows us to understand the treatment that has been (and continues to be) given to thousands of people, as well as the myths and stereotypes that underpin such attitudes. As Díaz Velázquez (2009) points out, distinguishing between paradigms and models is not equivalent to a historical overview or to reconstructing evolutionary stages in the conception of disability. Nor does it mean that a paradigm shift eliminates the previous one. While conceptual changes stem from sociocultural shifts, and one paradigm or another has predominated at certain times, the classification serves more of an illustrative purpose, since certain beliefs and practices persist, continuing to validate some of them.

The first paradigm recorded in the literature is that of exclusion, which explains the origin of disability from a religious perspective and conceives of it as punishment for one’s own sins or those of one’s ancestors. From this paradigm, two models emerge: the eugenic model and the model of marginalization. The former prevailed in Greco-Roman cultures during classical antiquity. The great interest of these societies in aesthetic and intellectual perfection justified practices such as the infanticide of those born with a physical or intellectual characteristic that classified them as “weak” or “imperfect.” The model of marginalization, for its part, primarily involved relegating people with disabilities to begging and poverty. Largely influenced by Judeo-Christian beliefs, this group was reduced to objects of care, and the Catholic Church presented them as a way to atone for individual or family sins through charity (Figari & Fernández Unsain, 2023; Fuentes Avila et al., 2021; Palacios & Bariffi, 2007).

With the advancement of biomedical disciplines between the late 18^th and early 19^th centuries, a shift emerged in the conceptualization of disability, known as the rehabilitation paradigm. World War I was a significant turning point in this process, due to two events: the need to reintegrate and rehabilitate the population returning from the war with some loss of function or limbs, and the redefinition of criteria for normality to expand the number of individuals considered “useful” and increase the ranks of the armed forces. The first model within this paradigm was the medical model, which employs the health-disease dichotomy to explain disability and equates it with a pathology. Consequently, it views the person as an object of medical assistance and prioritizes subjecting them to treatments to adapt them to the standard of functionality, which in many cases leads to violence and institutionalization. The second model, the biopsychosocial or integrative model, incorporated the terms “facilitators” and “barriers” into the study of disability for the first time to emphasize the importance of the environment, although it continued to interpret disability as a health condition or the consequence of an illness (Aristizábal, 2021; Figari & Fernández Unsain, 2023; Palacios & Bariffi, 2007).

Even though these models fostered legal advancements, they utterly failed to address the needs of people with disabilities, as they sought to do so solely through medical rather than social measures. In this context, between the 1960s and 1970s, social movements emerged in places like the United Kingdom, the United States, and Canada, comprised of and led by people with disabilities who demanded recognition as subjects of rights and opposed segregation. With the participation of activists and academics, the groundwork was laid for a new shift that solidified into the paradigm of personal autonomy, the first model of which is the social model of disability. This model posits that disability is not a characteristic of the person or an individual attribute, but rather a social construct. Their basic arguments are: a) it is not the person who must be modified to adapt to the norm: it is the social structure that must change, and b) people are not “disabled”, the environment disables (Damiani Pellegrini, 2022; Figari & Fernández Unsain, 2023).

THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES
The social model is based on the Convention on the Rights of Persons with Disabilities (CRPD), a legal instrument adopted by the United Nations General Assembly in 2006. The CRPD is a treaty based on the Universal Declaration of Human Rights that demands respect for the fundamental rights and freedoms of people with disabilities and is proposed as a standard for evaluating public policies adopted by member states. It recognizes people with disabilities as a highly heterogeneous population, such that the responses to ensure inclusion must be as diverse as the lived experience of disability. Traditionally, it has been thought that creating accessible spaces simply requires modifying their architectural features (installing ramps or elevators, for example). However, the CRPD specifies that accessibility must also be guaranteed in information and communication across different social, educational, health, cultural, and recreational settings. Based on this, Article 2 of the treaty defines fundamental concepts such as “reasonable accommodation” and “universal design,” while Article 21 states that it is necessary to promote the recognition and use of sign language, Braille, and augmentative and alternative communication (AAC) systems.

In recent years, it has been argued that the social model has been superseded by the so-called functional diversity model, a new approach that demands an intersectional view of disability and places greater emphasis on ableism, understood as the discrimination exercised against this population. It maintains that the term “disability” is also pejorative and criticizes the previous model as insufficient because it fails to reflect the heterogeneity of identities within each subsector and to unify their needs. Some authors also mention the existence of a third model derived from the paradigm of personal autonomy: the human rights model, which is based on the principles of dignity and equality.

Disability and poverty
Picture: Arturo Herná

Despite this variety of classifications, there is still no consensus on whether these three models should be considered distinct or grouped into one. It is undeniable that advances in terminology and the approaches of activism and research have gradually laid the groundwork for the recognition of the rights of people with disabilities. While there is also no consensus on the definition and validity of the concept of “disability,” because of this theoretical development, it is currently understood as the product of the interaction between a reduction or loss of some physical, sensory, or cognitive function and the barriers present in the environment, which are socially constructed. This definition, proposed in the CRPD (https://www.un.org/esa/socdev/enable/documents/tccconvs.pdf), seeks to clarify that the problem does not lie with the person but with the contextual elements that hinder their participation and the exercise of their fundamental rights.

THE SITUATION IN MEXICO
In Mexico, although the country has been a State Party to the CRPD since its promulgation, the officially adopted definition of disability remains outdated. This is evident in the way national agencies such as the National Institute of Statistics and Geography (INEGI) measure its prevalence in censuses. For this purpose, they use the International Classification of Diseases (ICF) of the World Health Organization (WHO, HYPERLINK “https://iris.who.int/server/api/core/bitstreams/6f65baa4-134d-4450-ba52-bb4962a4444b/content”), which is based on the biopsychosocial or integrative model that, as mentioned, corresponds to the rehabilitation paradigm. In our country, a person is considered to have a disability if they respond “Does so with great difficulty” or “Cannot do so” to any of the following activities: “seeing, even with glasses,” “walking, climbing stairs, or going down stairs using their legs,” “hearing, even with a hearing aid,” “moving or using their arms or hands,” “remembering or concentrating,” “performing their daily activities due to emotional or mental problems,” “bathing, dressing, or eating,” and “speaking or communicating.”

The National Human Rights Commission (CNDH, 2018) points out that this method has significant limitations. On the one hand, it focuses on the individual and their physical condition by using outdated terms that emphasize individual deficiencies. Furthermore, it underreports and renders invisible the needs and identities of certain groups, such as neurodivergent individuals, deaf people, and people living with psychosocial disabilities.

The WHO estimates that more than 1.3 billion people worldwide live with disabilities (https://www.who.int/es/news-room/fact-sheets/detail/disability-and-health), representing approximately 16 percent of the global population. In Mexico, it is estimated that there are around 8.8 million people aged five and older with some form of disability, the most frequent being those related to vision, even with the use of glasses (45.8 percent), and difficulties walking, climbing, or descending stairs using the legs (40.3 percent). These conditions affect women more frequently, and their main causes are illness, advanced age, and congenital factors (https://www.inegi.org.mx/contenidos/saladeprensa/aproposito/2024/EAP_PCD24.pdf). Disability is not an isolated individual experience: it permeates and transforms family life. Families assume an essential role as primary support, care, and protection networks, but they also face emotional, social, and economic challenges that impact their dynamics and quality of life.

People with disabilities
Picture: Sebastian ListeNOOR

According to the WHO World Report on Disability (2011), people with disabilities worldwide systematically face social, cultural, and economic barriers that limit their full participation in society. This population is less likely to enter, remain in, and progress through the education system compared to those without disabilities. This early exclusion directly impacts their opportunities to access better living conditions. In the workplace, prejudices about supposedly low productivity persist. These stigmas translate into high unemployment rates, precarious employment, and lower wages. Consequently, people with disabilities experience higher rates of poverty and economic dependence. The same is true for access to health services. Infrastructure often lacks accessibility, and insufficient training of healthcare personnel limits adequate care, violating their right to health.

SEXUAL JUSTICE, UNDERSTOOD AS EQUITABLE ACCESS TO THE EXERCISE OF SEXUALITY AND REPRODUCTIVE RIGHTS, UNDER CONDITIONS OF EQUALITY, AUTONOMY, AND DIGNITY

In Mexico, the figures confirm these trends. According to the National Survey on Discrimination (ENADIS) conducted by INEGI (2022), people with disabilities face structural discrimination that limits the full exercise of their rights. A third of this population perceives little respect for their rights, while the majority feel socially rejected and seen as incapable of making decisions. Their main problems include a lack of accessibility in streets and transportation, the inflated costs of therapies and care, as well as obstacles to obtaining employment, accessing government information, and receiving social support or medical attention. More than a third report having been discriminated against in the last year, mainly because of their disability, and although a considerable proportion have experienced the denial of some right, almost 90 percent do not report it because they believe it will have no effect.

INEQUALITY AND SEXUALITY
These structural inequalities experienced by people with disabilities also impact their sexuality. It’s important to clarify that sexuality is a fundamental part of every person and is present throughout life; it’s not limited to sex or reproduction, but also includes gender, sexual orientation, feelings, pleasure, intimacy, values, and how people relate to others. The way sexuality is experienced depends on biological, emotional, social, and cultural factors. The sexuality of people with disabilities is often surrounded by myths and misconceptions, based on the idea that it’s reserved only for those who meet standards of youth, health, and beauty, which renders invisible and excludes those who don’t conform to these parameters.

CHILDREN WITH INTELLECTUAL OR PSYCHOSOCIAL DISABILITIES ARE PARTICULARLY VULNERABLE, WITH A FIVE TIMES GREATER LIKELIHOOD OF BEING VICTIMS OF ABUSE

The misconception surrounding the sexuality of people with disabilities reinforces exclusion, undermines their autonomy, and limits their sexual and reproductive rights. In response, it is essential to discuss sexual justice, understood as equitable access to the exercise of sexuality and reproductive rights, under conditions of equality, autonomy, and dignity (World Sexual Health, 2025). Sexual and reproductive rights are part of universal human rights, which include the right to life, liberty, personal security, equality, and non-discrimination, as well as protection from torture and other cruel, inhuman, or degrading treatment. Recognizing sexual justice means ensuring that all people, regardless of their physical, functional, or physical characteristics, can experience pleasure, establish emotional bonds, and live their sexuality fully.

Multifactorial discrimination in women and girls with disabilities
Picture: Índice Político

The United Nations Population Fund publication, Young Persons with Disabilities: Global Study on Ending Gender-Based Violence and Realizing Sexual and Reproductive Health and Rights (2018), indicates that children and young people with disabilities face serious sexual and reproductive health problems, as well as high rates of violence. Regarding sexual and reproductive health, there is a persistent lack of accessible information and comprehensive sexuality education; and there is a lack of reasonable accommodations and adjustments in facilities and materials, which limits their ability to make free and informed decisions about their sexual and reproductive lives.

In terms of violence, the data is alarming: children with disabilities are four times more likely to suffer aggression than their peers without disabilities; more than one in four has experienced some form of violence, and one in five has suffered physical violence. Furthermore, they are almost three times more likely to suffer sexual violence, with girls being the most affected. Children with intellectual or psychosocial disabilities are particularly vulnerable, with a five times greater likelihood of being victims of abuse. Forms of violence range from bullying and physical discipline to forced sterilization and repeated sexual abuse.

The restriction or denial of the legal capacity of people with disabilities has also been used to justify practices that violate human rights, including forced sterilization, which primarily affects girls and women. This measure not only violates their reproductive autonomy but also exposes them more easily to sexual violence by eliminating pregnancy as a visible consequence of abuse. Other troubling medical interventions have also been documented, such as hysterectomy, performed under the guise of avoiding the pain and discomfort of menstruation, based on the assumption that people with disabilities cannot manage it adequately. Estrogen treatments have also been used to halt physical growth and delay puberty. All these practices, presented as a form of “protection,” have even been recommended to families by healthcare professionals.

In the early 2000s, doctors Gunther and Diekema (2006) published in a scientific journal the application of an innovative growth-attenuation treatment in the case of Ashley X, a Seattle girl with severe intellectual disability who could neither walk nor talk. At age six, following the doctors’ recommendation, her parents agreed to a series of interventions: hormone therapy to slow her growth, a hysterectomy, and the removal of her breast buds. The rationale was to improve her well-being and facilitate daily care. By reducing her size, it would be easier to move her, bathe her, and attend to her hygiene, thus decreasing physical risks for both her and her parents. Furthermore, the aim was to prevent complications arising from a larger body, such as pressure ulcers or pain; to avoid the effects of menstruation and fertility through the hysterectomy and to reduce pain and the risk of cancer through the removal of breast tissue.

Ashley’s case generated strong controversy in the medical, ethical, and human rights fields. Among the main criticisms was that the interventions benefited the parents more than the girl, as they facilitated her care. It was also argued that the practices sought to infantilize her or turn her into a “freak” by hindering her natural development, in addition to violating her dignity, bodily integrity, and right to grow and develop. Furthermore, it was considered an act of discrimination based on gender and disability, and was linked to eugenic practices and forced sterilizations of the past. Another critical point was the inadequacy of the ethics committee, with calls for greater independent oversight and the participation of external advocates.

Diekema and Fost (2010) subsequently defended the appropriateness of the procedure, maintaining that the interventions were performed cautiously, under ethical supervision, and focused on Ashley’s well-being, without eugenic aims. They argued that the risks were comparable to or even lower than those of alternatives such as decades of contraception and that growth attenuation achieved its objectives without grave consequences. Furthermore, they emphasized that the case demonstrates the need to establish rigorous criteria and follow-up mechanisms, without completely excluding such practices in carefully selected patients with profound cognitive impairment.

In Mexico, Disability Rights International (2015) documented violations of the sexual and reproductive rights of women with intellectual disabilities. In interviews with 51 participants, more than half reported being told they should not have children. One woman recounted that, according to the cultural beliefs she grew up with, only women without disabilities could reproduce. Likewise, more than half reported having little information about sexuality and reproductive health, which explained the lack of gynecological consultations. The report also revealed that 43 percent suffered some type of sexual abuse during medical appointments and that several were victims of rape by healthcare personnel. Half of the women interviewed had been advised to sterilize by a family member, and almost half had undergone the procedure, often without understanding its purpose. Among those who became pregnant, nearly a third were pressured to have an abortion. The report also documented that one institution required forced sterilization as a condition for admitting girls with disabilities.

UNIVERSITIES NEED TO EXPAND RESEARCH IN THIS FIELD, PLACING PEOPLE WITH DISABILITIES AT THE CENTER

ETHICS AND DISABILITY
These cases highlight the profound ethical dilemmas faced by people with disabilities, their families, and medical teams. Interventions are often justified as mechanisms to improve well-being, facilitate care, or prevent reproduction; however, they raise serious concerns about the autonomy, bodily integrity, and reproductive rights of this population. Furthermore, they reveal the lack of family and community support, leading to decisions being made in contexts of overburdened and precarious situations.

Closing the inequality gaps in the exercise of sexual and reproductive rights is a sexual justice imperative that demands a comprehensive approach, grounded in human rights, equal opportunities, and non-discrimination. First, it is essential to recognize that language and cultural practices play a vital role: talking about disability is not neutral and can either perpetuate stigmas or, conversely, dignify. Eradicating derogatory terms and using guides such as the CeDETi Terminology Manual (https://www.cedeti.cl/wp-content/uploads/2022/04/Manual-de-Terminologi%CC%81a-CEDETi-UC.pdf), the dictionary ¿Cómo se dice? by the Yo también association (HYPERLINK “https://drive.google.com/file/d/1e8aLh_BkjCq0IJFCVql2Y_3Q5YWw7NRF/view”) or the United Nations Guidelines for Inclusive Communication (HYPERLINK “https://www.ungeneva.org/es/about/accessibility/disability-inclusive-language”) is indispensable. Furthermore, it is necessary to question and overcome paternalistic paradigms that limit autonomy; to move towards social and human rights models; and to guarantee training in educational and health communities to provide accessible and respectful care. Specifically, it is necessary to provide professionals in medicine, nursing, psychology, and social work with accessibility tools, AAC (Augmented Consent), and a human rights perspective to guarantee consultations without discrimination, clear information, and procedures in which the person can give informed consent.

It is necessary to eliminate barriers in education and health, establish accessible protocols, strengthen economic and community support for families, and provide ongoing training for healthcare and education personnel on sexuality, disability, and rights. It is also crucial to demystify stereotypes through public campaigns and advocacy by people with disabilities, promote active participation in public policies and educational programs, and offer support throughout the life cycle. These actions must be accompanied by evaluation criteria, impact indicators, and monitoring mechanisms that guarantee inclusive, respectful, and violence-free environments. Finally, universities need to expand research in this field, placing people with disabilities at the center, include a disability perspective in educational programs that recognize them as subjects of rights, desires, and full citizenship, and promote evidence-based policies.

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