An Ableist Healthcare System Is Affecting Millions Of Disabled Women.
Decision-making bombards our daily lives with an unfathomable pressure at any given second. Whether they are simple decisions, such as which shirt you prefer, to life-changing ones, like moving to another country.
On any given day, the average adult makes 35,000 remotely conscious decisions. While we don’t necessarily act upon all of them, our internal dialogue is constantly running within our conscious and subconscious minds, even when we are least aware of it.
From decisions surrounding our food to our future to the very next word coming out of our mouth, our internal monologues consist of a never-ending fabrication of the future under the weight of our preexisting biases, influences, and preconceptions.
It’s a satisfying feeling to feel in control of your conscious decisions. For the most part, it’s your choice whether you go shut your laptop off and watch a movie or not. You get to choose what you want to wear today. And arguably the most important of them all; you are in control of the decisions you make regarding your own body.
It’s a privilege that we often see as a right.
Yet as a society, we often turn a blind eye to the people who are deprived of this right. We don’t acknowledge the millions of individuals with disabilities who cannot make choices for their bodies by themselves, due to the structure of our healthcare system.
An inherently ableist system.
Our healthcare system is not designed for individuals with disabilities.
And when it comes to women, our healthcare system turns a blind eye to the millions of women around the world with an intellectual or physical disability. It turns a blind eye to their sexual and reproductive healthcare needs.
When we combine two topics society rarely addresses, those being women with disabilities and reproductive needs and rights, it is clear that there is minimal reform being done in this realm of healthcare.
As a society, we remain unaware of the specific sexual and reproductive needs of an enormous population.
Women with physical and intellectual disabilities are falling prey to a system that isn’t serving them.
Women and girls with disabilities account for approximately 10% of the world’s population of women. Over 300 million women around the world have cognitive and/or physical disabilities.
Furthermore, women constitue 75% of disabled individuals in low and middle-income countries.
A culmination of access to care, products, minimal resources, and increasing rates of sexual violence, exploitation, cultural or societal barriers, and assumptions towards women with disabilities result in widespread difficulty for women in developing regions and exacerbate such issues.
Especially in developing countries, women are more likely than men to become disabled during their lives, due to issues concerning gender bias in the allocation of resources, but also in regards to services or healthcare providers.
In these areas, women and girls are also less likely to receive medical attention than men, especially when medical care is inaccessible. In such areas, women are also less likely to receive preventative care, including immunizations.
In general, women face a multitude of social, cultural, and religious factors when it comes to accessing healthcare in both developed and developing regions. When disabled women are added to that mix, the chances of them accessing specific care and receiving treatment, especially regarding their sexual and reproductive health, are slim to none.
And even if they do, it comes with a cost. Often, it comes in the form of compromised treatment and care that does not take into account a woman’s personal autonomy.
Despite the cultural, religious, and social stigma towards women with physical and intellectual disabilities, they have the same sexual and reproductive health needs as women and girls without disabilities.
Multiple intersecting forms of discrimination on the basis of gender and disability disregard the needs of these women and hinder women from obtaining the extent of their sexual and reproductive health (SRH) and rights.
Women with disabilities have the right to complete physical, mental, and social well-being in all matters relating to their reproductive system. They should be given the same amount of knowledge about reproductive and sexual safety, and have the freedom to decide if and when they may want to reproduce.
Yet, our healthcare system acts otherwise. Despite the severity of the issue, many prominent barriers are still present, preventing women with disabilities to receive the extent of the care they need.
Physical and Informational Barriers
Women with disabilities face physical and informational barriers to accessing SRH information, goods, and services.
Children and adolescents with disabilities are often excluded from or aren’t given access to sexuality education programs, due to assumptions that they do not need this information. The information that girls are provided regarding SRH is frequently not provided in accessible formats either, denying women and girls with disabilities information essential to avoid sexual abuse, unwanted pregnancy, and sexually transmitted infections.
According to the World Health Organization, both children and adults with disabilities are at a much higher risk of violence than their non-disabled counterparts. The WHO estimates that 35 percent of women worldwide experience gender-based violence in their lifetime.
According to the Human Rights Watch, individuals with disabilities are up to three times as likely as others to be victims of physical abuse, sexual abuse, and rape. Due to a culmination of factors, specifically, a lack of education and discrimination of the basis of their gender and disability makes them disproportionately more vulnerable to violence. Women and children with cognitive disabilities are among the most vulnerable; they are nearly four times as likely to experience violence.
Furthermore, research regarding STIs and pregnancy in a national study based within the United States indicated that for adolescent females who were sexually active, 26% of those that were cognitively impaired reported having an STI, in comparison to 10% of adolescent females with average cognitive ability. The same study found that teenage girls that were cognitively impaired were nearly twice as likely to become pregnant than teenage girls without a cognitive impairment.
Inadequate Equipment and Facilities
Moreover, equipment and facilities in sexual and reproductive healthcare settings are seldom physically accessible or designed with women with disabilities in mind.
A common example of the lack of accessibility for individuals with physical disabilities is the absence of examination tables that lower, in order to facilitate the transfer of the patient from a wheelchair to the table, preventing wheelchair users from being properly examined. Restrictions and improper facilities such as these expose women to limited, substandard, and noncomprehensive care. And even when health services are physically accessible, women and girls with disabilities often face financial, social, and psychological barriers to accessing adequate reproductive health care.
A lack of adequate equipment and facilities also relates to proper information and access to healthcare practitioners. Especially in developing countries, it is critical that the patient has access to a healthcare provider who can properly diagnose, treat, and aid women with disabilities who may have a difficult time communicating or seeking help.
A three-year-long study conducted in the Philippines in 2015 showed that service providers often had limited awareness of the sexual and reproductive health needs of women with disabilities and an inadequate understanding of their rights. Furthermore, they had very little training in relation to disability and limited access to the resources that would enable them to provide a disability-inclusive service. The study even noted that some service providers held prejudiced attitudes towards women with disabilities seeking sexual and reproductive health services, resulting in disability-based discrimination. In addition, the providers were often unaware of specific factors undermining the health of women with disabilities, including violence and abuse.
Another study published earlier this year conducted a systematic review of qualitative research done worldwide between 2009 and 2017, regarding the barriers in access to healthcare for women with disabilities.
The analysis of 24 preexisting studies showed that in both developed and developing countries, women with disabilities reported an array of problems in accessing information regarding general health and even more difficulty in accessing information and services regarding reproductive health. In developing countries, such as Cambodia, women who lived in more rural areas reported different patterns in access to SRH services and information. The main source of information was a social network of families, neighbors, and friends, which could be unreliable and factually incorrect.
However, even when access to the internet and services were available, many women with disabilities noted how providers and healthcare staff were unable to provide adequate explanations as to practices such as signing consent forms. When healthcare providers were available, communication proved to be a barrier between healthcare providers and patients, especially in women with hearing loss or intellectual disabilities.
Discriminatory Practices and Prejudice
Women with disabilities also face discriminatory sexual and reproductive health care. In general, health care providers generally demonstrate a lack of sensitivity and support for women and girls with disabilities. This is largely due to the lack of appropriate training for health care providers. Many health care providers hold inaccurate, stereotypical views about women and girls with disabilities, such as assumptions that they are asexual.
Biases and lack of training decrease the likeliness of providers offering women with disabilities information about contraceptive methods, prevention of sexually transmitted infections, including HIV, or screening for domestic or sexual violence or reproductive cancers. Disabled women are also stereotyped as requiring special protection and must undergo measures that may not be aligned with their ambitions or relationships. For example, the sexual interests of people with physical disabilities such as spina bifida or cerebral palsy are often underestimated based on false assumptions about their sexual capabilities. People with sensory disabilities such as blindness may be burdened by false assumptions about their parenting abilities. And those with intellectual disabilities are often looked at only as possible victims of sexual exploitation or victims of other external occurrences, instead of real individuals with sexual and reproductive capabilities who require adequate protection, proper education, and sexual autonomy.
However, these practices are also tied in with social norms, and cultural practices. Particularly in developing countries, but also in countries that harbor a lot of stigma towards the issue, the needs, rights, and interests of these women are looked past simply due to a lack of proper infrastructure as well as social and cultural barriers.
In the three-year-long study conducted in the Philippines, described above, healthcare providers had a difficult time helping women due to limited awareness, little training, limited access to resources, but most importantly, due to prejudiced attitudes towards women with disabilities seeking sexual and reproductive health services, resulting in disability-based discrimination.
Another example is a study looking at women with disabilities in South Africa. In this study, researchers found that healthcare providers openly questioned the possibility that their patients were engaging in sexual activity and did not offer them choices about birth control methods; a form of stigma in which healthcare providers made assumptions and did not trust their patients due to preexisting bias.
Due to certain levels of stigma, many assumptions are made on the part of healthcare providers leading to coercion and lack of consent and understanding between the healthcare provider and the patient.
A Lack Of Personal Autonomy
In addition, women with disabilities have a lack of personal autonomy when it comes to utilizing their reproductive rights.
This applies particularly to women with intellectual disabilities, who face a whole new set of challenges. Decisions cannot always be made by them, so they are made for them, taking away personal autonomy.
While it may sound simple in theory, this poses a unique issue. While the individual may not be fully equipped to make the decision themselves, they often aren’t even given the choice or a say in the decision being made. It’s made for them, often not even by those acting on their part, but by the assumptions made by doctors and medical professionals, taking away their upper hand in the decision.
Women are disproportionately subjected to practices such as forced or coerced sterilization, contraception, and abortion. Beyond these practices, there is often substituted decision-making by parents, guardians, or doctors, who make decisions about these reproductive health procedures for women deprived of legal capacity. Forced practices are frequently based on false and discriminatory assumptions about women with disabilities’ sexuality or ability to parent, or are based on the desire to control their menstrual cycles and growth.
Healthcare providers easily dismiss the possibility of achieving informed consent when patients have intellectual or developmental disabilities. They can wrongly associate certain diagnoses with an inability to understand or communicate certain topics or feelings.
Furthermore, healthcare providers may be inexperienced in helping patients with intellectual disabilities with more complicated medical questions and may be unwilling to take the time to explain certain topics with patients who may have difficulty with communication, causing the patient to have a lower hand in decisions concerning their own reproductive health.
The healthcare system functions under a realm of assumptions towards women with disabilities.
These assumptions spawn from the beliefs that women with physical or cognitive disabilities are unable to rationalize and make decisions for themselves. However, it is a mistake to assume that having a certain disability affects an individual's competence.
Beyond the lack of physical infrastructure, a cloud of biases, preconceptions, prejudice, and miscommunication surround the intersection between disability and gender when it comes to sexual and reproductive needs and rights.
Women and girls with disabilities have the same sexual and reproductive health and rights as other girls and young women. The obstacles they encounter are, in part, due to cultural barriers and stigma. However, many of these issues can be largely addressed through legislation and policy frameworks, as well as a focus on increasing accessibility to information, resources, and services.
While such frameworks can only be modified and approached modified at a much larger scale, we can only begin to approach stigma and cultural barriers through local change and grassroots movements. In order to see change at a larger scale, we must change the attitudes and practices of health care providers, service providers, teachers, and families.
However, the most important aspect of this issue is in breaking down the cultural and social stigma surrounding it. Despite their prevalence, we are not trained to discuss such issues due to a feeling of discomfort, and for many, fear.
Beyond tangible metrics surrounding the issue, it is crucial that we begin to openly discuss such issues, as well as current and future prospects we must undertake in order to defy the narrative that is currently being written for millions of women around the world.
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