By Manasvini Pochimireddy.
Author’s Note: I wrote this piece for a general academic audience of my peers. I specifically chose this topic because disabled women have been a historically marginalized group, with inadequate resources in the healthcare system to lead healthy lives. In terms of their reproductive and sexual healthcare, these women face a public stigma and are never made aware of any risks. While much more research is needed in order to implement lasting changes in the healthcare of this population, I wanted this paper to simply introduce people to this topic and raise awareness that this is a sector of healthcare requiring attention.
Abstract:
Women with disabilities face many challenges in the healthcare system, as there has been a long-standing stigma around disabilities. Specifically, these women have been met with disregard and insensitivity, and sometimes they are even denied access to sexual and reproductive healthcare. Despite the large number of individuals with disabilities in the general population, there is a lack of research on the various issues faced specifically by women with disabilities. This review of literature will investigate the question: “What does current scholarship tell us about the disparities in reproductive and sexual healthcare faced by women with disabilities?” To provide a more complete understanding of why this disparity exists and how to effectively address it, more studies need to be conducted about changes that need to occur in this field.
Introduction:
The term “disabilities” encompasses a variety of conditions that can result in lack of function, either physically (impairment in bodily activity) or cognitively (impairment in mental well-being) [1, 2]. Currently, individuals with some form of disability compose approximately 15% of the world population. However, when considering the amount of disabled individuals by gender, 19.2% of all women are affected globally, whereas only 12% of all men are affected [2]. This 7% difference would mean that there are approximately 250 million more women than men experiencing disability in our current global population [2].This has been especially prevalent for women, as their reproductive and sexual healthcare is not seen as a priority [3, 4]. Reproductive and sexual healthcare refers to treatment of women before and after conception, as well as gender specific care. This review will focus on the disparities faced by disabled cis-gendered women in the United States, specifically in terms of their reproductive and sexual healthcare. Furthermore, when referring to “women” in this paper, it will be focusing on cis-gendered women. This is not to say transgender women do not face similar difficulties.
Women with disabilities face a multitude of challenges in the healthcare system, including a lack of proper health education, stigma concerning their reproductive health, and greater risk factors for specific ethnic groups [2, 3, 5-8]. In terms of education, women with disabilities are not provided with enough knowledge to make informed decisions regarding their well-being in terms of reproductive and sexual health [3, 7]. Healthcare practitioners and caretakers are equally uneducated on providing resources and knowledge to these women, leading to unanswered questions and uncomfortableness on both ends of these conversations [2]. This stems from lack of discussion in school systems regarding people with disabilities in the context of reproductive and sexual health [9]. Furthermore, many healthcare practitioners and family members hold a stigma against women with disabilities and their reproductive health, leading to poor quality of care in the few appointments that do occur [4, 8]. Many women with disabilities are further subjected to increased preconception risks (obesity, stress, medications) and marginalized because of their race [5, 6].
While we have made significant advances in many aspects of healthcare, resources to support these women have been at a standstill [3, 4]. The education about disabled women’s needs has also remained both inadequate and stagnant. While research has been done to establish that this is an issue, no further steps have been taken to improve the state of this problem. This review of literature will investigate the different factors that exacerbate the disparity in reproductive and sexual healthcare for women with disabilities.
Reproductive and Sexual Health Education
Inadequate education in terms of sexual health has remained a contributing factor to the lack of healthcare resources in preconception health for disabled women. Preconception health represents the general well-being of a woman during her reproductive/fertile years (between puberty and menopause) in terms of her overall health, including pre-existing conditions. Despite women with and without disabilities both having similar pregnancy rates, there was a significant lack of knowledge among disabled women regarding their own well-being and personal expectations for pregnancy [3, 7]. From 2018 to 2022, multiple independent studies confirmed there were higher rates of unplanned pregnancies reported amongst the disabled womens’ population when compared to women without disability [3, 7, 10]. For example, one study found among pregnancies in women with disabilities, 53% were unwanted vs. 36% being unwanted in non-disabled women [7]. Along with high rates of unplanned pregnancies, a similar trend exists in the use of birth control. A survey identifying rates of birth control use found 19.7% of sexually active disabled women among the ages of 15-24 were not using any method of birth control, compared to 10.6% of non-disabled women in the same age group [10]. This means that nearly double the amount of disabled women are at risk for unplanned pregnancies when compared to non-disabled women [10]. These higher rates of birth control usage and unplanned pregnancies in the disabled womens’ population stem from the lack of sexual and reproductive health education being taught during their formative years [3, 9, 10]. Current studies examine the lack of sexual health education for women with disabilities, but more studies should be conducted on how and when to provide this type of education to ensure that these women are informed about their health. Moreover, this discussion needs to be normalized to create amore inclusive environment when educating about disabilities in the context of reproductive and sexual health.
Not only is there a lack of sexual and reproductive health education for women with disabilities, but there is also a lack of this same education on the part of healthcare practitioners and caretakers in this field [1-3, 8]. It is vital for people in these positions to understand the needs of a woman with a disability in order to prepare them for what to expect, along with the fact that their needs may be separate from the needs of a woman without a disability [2, 3]. Kalpakijan et al. conducted a study among 81 self-reportededly disabled women who explained via group and individual interviews regarding their reproductive healthcare experiences. Kalpakijan et al. identified five major themes that informed a framework to be implemented across institutions. These themes were knowledge about reproductive health, communication about reproductive health, relationships, the reproductive health care environment, and self-advocacy/identity [11]. To provide adequate, quality care and be responsive to the questions of disabled women regarding their sexual health, changes need to be made to include sensitivity training, specifically in properly and respectfully communicating differences in needs for disabled women during pregnancy [2, 3, 8]. Further research needs to be conducted on how healthcare providers and caretakers can be further educated on the needs of disabled women in terms of sexual and reproductive health.
Effects of Ethnicity on Healthcare Disparities of Disabled Women
Ethnicity plays a role in exacerbating the differences in reproductive and sexual healthcare between disabled and non-disabled women. The systemic differences associated with different racial groups that result in unequal access to a variety of health resources extend to women with disabilities and their access to reproductive health resources as well [6]. There are much higher rates of reproductive-related complications, such as post-conception/postpartum complications, or issues during the pregnancy itself among disabled women when compared to non-disabled women. However, upon further examination, an unequal distribution of these complications across different ethnicities is found [5, 6].The combination of having a disability and being an ethnic minority seems to have an additive effect on the disparity in accessing adequate reproductive healthcare resources for women [5].
There are certain preconception health risks (obesity, stress, medications) that are more severe in certain ethnic communities of disabled women, such as obesity in disabled black women [5]. There are also higher rates of gestational diabetes and gestational hypertension (preeclampsia) found among disabled women of Hispanic and African-American origin, with multiple possible causes, including high mental distress, lack of access to proper nutrition, and low levels of exercise [4, 5]. Most, if not all of these adverse preganancy conditions are rooted in structural racism resulting in restricted access to determinants of health [5]. Further studies should be done on how to lessen the impact of the combination of ethnicity and disability on access to healthcare, and to isolate why specific conditions and complications are more prevalent among specific ethnic communities of disabled women.
Social Attitudes Towards Women with Disabilities
Public stigma of women with disabilities severely limits their access to adequate resources in healthcare, specifically when concerning pregnancy and reproductive health. Firstly, women with disability are seen as less sexually active, despite many studies showing equal rates of sexual activity amongst women with disability and women without disability [9, 12, 13].
With these false expectations, many healthcare providers do not think to offer the same resources concerning reproductive and sexual healthcare to women with disabilities [3, 9]. Many disabled women are unaware of the fact that they could have children, due to the lack of information from their healthcare providers. As a result, they are often surprised by unforeseen pregnancies [3] In a survey from 2022 asking women about their healthcare provider visit, when disabled women opted to discuss their reproductive and sexual healthcare, they often felt insensitivity from the provider [3, 8]. They also felt uncomfortable asking further questions about their health [3, 8, 9] Not only did women feel this sense of embarrassment, their family members also felt this due to the public stigma of women with disabilities engaging in sexual activities [8].
This stigma resulted in a decrease in quality of care provided to women with disabilities [4]. When evaluating the number of visits by expectant mothers during pregnancy, it was found that there was a significantly lower number of overall visits amongst women with disabilities when compared to women without disabilities, especially in the first trimester [4]. Moreover, when comparing rates of miscarriage among women with disabilities vs without, it was found that disabled women experience miscarriages at a rate of 31.63 % versus women without disabilities experience miscarriages at a rate of 21.83% [14]. Many women also experience fear for their offspring inheriting their disability, even when there is no genetic link, due to the inadequate explanations provided by healthcare providers [2, 8]. These concerns should be properly addressed and answered without judgment, but instead are sidelined or in some cases, not even received [2]. The existing stigma can be combated through open communication between individuals with disabilities regarding their needs and people in positions who can implement changes to diminish the existing disparity. In addition, a more inclusive curriculum in sexual health should be implemented in primary school systems so that more individuals, as well as future healthcare professionals, can be exposed to this subject from an early age. This would allow for discussion about disabilities in context to reproductive health to increase, and to become more normalized in society.
Conclusion:
Overall, a variety of factors aggravate the disparity present in the reproductive and sexual healthcare of disabled women. The lack of sexual health education for disabled women remains, along with the lack of training and knowledge on the part of healthcare practitioners and caretakers attending to the needs of disabled women [1, 3, 7, 9]. This causes difficulties during family planning stages and during treatment, when these women haven’t been properly informed of the necessary measures [1, 15]. The current healthcare system has resources to support women without disabilities who face these issues, but when disabled women undergo similar circumstances, they find themselves with few places to turn to that can accommodate their needs [15]. Further studies also need to be conducted to find out why certain preconception health risks are more severe among certain ethnic groups, as there is evidence that specific medical conditions are more prevalent in specific communities [5, 10]. A systemic change to tackle the disparities faced by women with disabilities who are also ethnic minorities needs to be taken. To this day, disabled women who pursue reproductive health measures face negative attitudes from healthcare professionals [2, 11]. These attitudes can be dissipated through changes in the current sexual education curriculum, which would allow for both the disabled community and non-disabled community to learn about the needs of disabled women. Another vital part of reducing these disparities includes encouraging conversations about mental and physical differences that clearly exist and acknowledging them, so that more individuals are aware of the challenges faced by disabled women in the healthcare system. In the literature reviewed, there was a great discussion and evidence of the existence of this problem, but rarely were any solutions offered. There were a couple of suggested frameworks, but none that looked at the efficacy of its implementation. Moving forward, there need to be studies done regarding possible methods that can truly alleviate the disparity faced by disabled women.
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