Written By Azyadée Bleicher

Edited By Hannah MacDonald

To be a woman is to perform…to be a woman is to perform… to be a woman is to perform.

This sentence has plagued my mind: seven words that resonate so profoundly and so clearly illustrate what women are confronted with by simply existing in our society. Women perform in all senses of the word—even performing within their self-reflection, responding to the societal ideas of how we should be, act, and react. When we stray from these idealized versions, we are labeled as “crazy.” This performance of a lifetime deeply impacts all women. However, I believe this act of performing has a unique and significant impact on disabled women in particular. From a young age, women are conditioned to be accommodating, pleasant, and “manageable,” each a marker of “good and respectable womanhood.” These expectations push women to downplay their distress and needs—even more so for women with disabilities, as society often expects them to minimize their visibility and requests for support. In the video Crossroads: Advocating for Change at the Intersection of Gender and Disability, Dahal, a blind woman from Nepal, says: “I don’t want to be a burden to anybody, and that has influenced my decision to get married” (Sah 2024). These words carry the weight of societal expectations and reveal the entrenched ideologies surrounding disability. They reflect a culture that often places worth in independence and undervalues interdependence, forcing people to feel they must minimize their needs to avoid being labeled a burden. Women are taught not to ask for help, not to disturb, even more so women with disabilities. 

I was taught to be independent since I was a young girl. I have never been one to ask for help, and this only got worse when I was diagnosed with endometriosis. Endometriosis is a chronic gynecological condition where tissue similar to the lining of the uterus grows in other parts of the body and causes heightened pain. It’s referred to as the “missed disease” because although one out of ten women are affected by it, science is nowhere near understanding endometriosis entirely (Hudson, 2021). I routinely downplay my symptoms, having internalized the dismissal I received from medical professionals. It took five years to get a diagnosis because each doctor visit had the same outcome: “Cramps can hurt, you will be fine” were the words that came from both men and women in the medical field. I was only taken seriously by my family, and doctors only truly listened to me after an episode of such severe pain that I was unable to walk. The level of pain I was experiencing was so immense that they could visibly see me enduring it. Having to wait until my cries became loud enough for doctors to hear was a harsh reality to accept. I learned I would only be helped when I could be seen in physical pain; my words were not enough. My experience is just one of many, symbolic of a healthcare system that refuses to see women’s pain as valid or urgent. That experience was a brutal reminder that even in healthcare, a system supposedly designed to care for all, disabled women’s pain is viewed through a lens of suspicion and disregard. The constant denial of our pain and our need for support make us understand that in the eyes of society, our suffering is just another experience we must keep to ourselves; we have to keep performing. There are many misconceptions about disabilities, including stereotypes surrounding disability being something we see and that if it’s not visible to others, it must not be that impactful in someone’s life. This doubt follows pain that cannot be seen. The skepticism that people impose on disabled people is solely because they cannot see and comprehend the disability themselves. For women, this dismissal of disability adds a complex layer of mistrust and disbelief, as though our experiences need validation through someone else’s eyes. 

Living with an invisible illness feels like an endless performance, forced to mask pain and struggle for the comfort of others in a world that refuses to acknowledge what it cannot see or understand. Women with autism are the embodiment of this performance. Indeed, women with autism are often diagnosed very late in life because they present different autistic traits than men do. Women mask themselves by imitating neurotypical behaviors to blend in and fit into societal expectations of women. This act of masking is most prevalent among women because of the social pressures and gendered expectations around behavior, communication, and social interactions.

Our performance, or mask, can be understood by centuries of women’s pain being downplayed or pathologized, often dismissed under vague terms such as “madness” and “hysteria”. “For centuries, hysteria has served as a dramatic medical metaphor for everything that men found mysterious or unmanageable in the opposite sex,” writes Mark Micale, a professor emeritus of history at the University of Illinois Urbana-Champaign (Backman, 2024). The word “hysteria” originates from ancient Greece, where physicians often used it to diagnose women experiencing a variety of symptoms, including pain, heavy bleeding, depression, anxiety, and fatigue. The word itself is derived from the Greek term hysteria, meaning “uterus” (Backman, 2024). At the time, these physicians attributed such symptoms to a failure to fulfill what they considered a woman’s primary role, such as marrying or bearing children (Backman, 2024). This history of medical neglect has deeply influenced how women’s health concerns are still viewed with skepticism today. Throughout history, women have routinely been silenced or dismissed by doctors, family members, or even specialists when they express their pain. The stigma surrounding women in pain is deeply rooted in the idea that women must be composed, calm, and easygoing, and must not cause any issues. And as it seems in our society, disabilities are treated as nuisances. Not all, though, as there is a separation between how “healthy” and “unhealthy” disabilities are perceived in society.

I want to preface this argument with my stand that there is no such thing as a “healthy” disability; it is entirely constructed by society. Women force themselves to appear perfect when no one truly is, and this fictitious idea is used to oppress not only women but also men. In a way, we oppress ourselves by trying to live up to these standards no one can attain. My understanding of a “healthy” disabled person is an individual who can take care of themselves without the help of others. However, being disabled doesn’t necessarily mean one needs accommodations or outside help to live an active life in society. In this case, we consider a disability healthy because it does not necessitate change; it does not require our social construct to change drastically. Following suit, “unhealthy” disabilities are the ones that require help, which is completely and utterly normal. Even people who are not disabled need help, but there is a distinction made between a person who is disabled and a non-disabled person when they ask for help. As Susan Wendell points out, this distinction is reinforced by societal attitudes that value independence and see the need for assistance as a personal failing rather than a natural part of human life (Wendell, 2001). Additionally, disabilities that require ongoing medical care or fluctuate in severity, such as chronic illnesses, are often treated with skepticism because they do not fit the common perception of disability as something stable and visible (Wendell, 2001). This can make it even harder for people with chronic illnesses to receive the accommodations they need, as they may not be seen as “disabled enough” to warrant support.

To dismantle these harmful stereotypes, society needs to challenge its perceptions of strength, performance, and what is considered “acceptable” forms of disability. I believe real change begins when we allow disabled women to define their experiences on their terms, free from the suspicion and expectations that mark them as either unworthy or worthy of support. Only then can we create a world where every woman, disabled or not, can be seen, heard, and believed in her pain and resilience. Indeed, mainstream feminist movements have made strides in advocating for gender equality but have historically overlooked the voices and needs of disabled women. This oversight once again reflects a limited point of view of womanhood through the eyes of disability and thus often fails to address the unique barriers disabled women face. For feminism to be truly inclusive, it must embrace the experiences of all women, including those with disabilities, ensuring that their struggles and strengths are also represented. As such, awareness campaigns talking about women and women with disabilities are needed to reduce the taboo around talking about our struggles, making the discourse standard the first step towards dismantling the stigma around disability. It starts with you. As individuals, we can begin by making our voices heard and not being scared to speak up about our struggles. This goes hand in hand with a redefinition of what it means to be a woman, which is of the utmost importance; we as women need to reclaim what it is to be a woman without having to perform for others. For disabled women, redefining this femininity means rejecting societal standards that are pushed onto them and creating their own definitions of what it means to be a woman with a disability. This reshaping is based on embracing authenticity over perfection and valuing/ practicing self-acceptance. Empowerment should come from our education at home and school. Home is often the first place where girls begin to learn about their identity, capabilities, and role in society, and school is where they are confronted with reality as an example of what society and the rest of their lives will be. That is why promoting an education that addresses mental health, sexual health, and inclusivity is essential. 

Doctor Yolanda Muñoz spoke words that will forever change my perception of advocacy and disability: “We will all become handicapped at some point in life, and we should fight for our future selves” (Muñoz, 2024). This sentence encapsulates why we should start advocating for ourselves. Change is necessary, and we must act for ourselves and future generations. There are gaps and inconsistencies in public knowledge about disability, and even more so when we consider how one’s individual experience living with a disability becomes much more complex when compounded by the intersections of gender, race, and class. We need to challenge the restrictive ideologies pushed upon us. As women with disabilities, we live in a system that wants us to disappear, that wants us to suffer in silence, not to disrupt. Disruption is precisely what we need to do. 

Bibliography:

Backman, Isabella. “From Hysteria to Empowerment.” Yale School of Medicine, March 20, 2024. https://medicine.yale.edu/news/yale-medicine-magazine/article/from-hysteria-to-empowerment/.

De Beauvoir, Simone. The Second Sex. Vintage, 2011.

Hudson, Nicky. “The Missed Disease? Endometriosis as an Example of ‘Undone Science.’” Reproductive Biomedicine & Society Online 14 (August 13, 2021): 20–27. https://doi.org/10.1016/j.rbms.2021.07.003.

Sah, Sita (Blind Filmmaker). “Crossroads. Advocating for Change at the Intersection of Gender and Disability.” (13:35 min). The Disability Justice Project. https://disabilityjusticeproject.org/film/crossroads/.

Wendell, Susan. “Unhealthy Disabled: Treating Chronic Illnesses as Disabilities.” Hypatia 16, no. 4 (January 1, 2001): 17–33. https://doi.org/10.1111/j.1527-2001.2001.tb00751.x.