Beneath the Surface: a Look into Invisible Disability

Beneath the Surface: a Look into Invisible Disability

 The intersection of invisible disability and gender studies is still a forming field of study. Illustrated through the work of forerunners such as Maureen Fitzgerald, Kathryn Paterson and Karen Depauw. And more clearly developed through the more recent voices of Ellen Samuels, Aimee Valeras, Margaret Vickers, Kendyl Klein, Samantha Bassler and Denarii Monroe.  Mental illness within women, especially eating disorders, is a subset of invisible disabilities studies that demonstrated a strong link with gender studies and show how physically bound the subjects are. These authors analyze the difficulties of invisible disability, particularly disclosure, and how society oppresses people with hidden disabilities.

In the article “The Hidden Disability Dilemma for the Preservation” of self Maureen Fitzgerald and Kathryn Paterson address specific difficulties of women with invisible disabilities. Published in 1995 at the forefront of gender studies in intersection with disability, “The Hidden Disability Dilemma for the Preservation” of self-relates many of the challenges women with invisible disabilities face in contemporary times. Easiest to relate is the ever present question of disclosure and consequences with both informing people of invisible disability and hiding it. This ties directly to analysis, of identity which is grounded within the studies of women with invisible disability. By focusing in on two case studies where women from Hawaii and women from Australia were compared. These two groups of women with invisible disabilities, the women from Australia with hidden Multiple Sclerosis(MS) and the women from Hawaii with Temporomandibular Joint Syndrome(TMJ), are able to convey the ways in which invisible disability affects certain ways beyond a case by case basis. One problem the women from this study face, as others with an invisible disability do, is the issue of legitimizing disability. Because invisible disability is generally not apparent to others it can be difficult to get recognition for the really impacts a condition has on an individual’s life. In the case of one woman who was deaf but did not seem that way she began carrying a white pole, not because she needed it but rather because people would not accept that she was deaf. There is a possible weight in revealing a disability, a weight on identity-based on people’s reactions to disability. Many women from this study hide the level of pain they are in and the symptoms they have for various reasons. But this isolation of themselves comes at a cost while being interviewed, many of the women admitted that they were not as happy or as fit as they used to be. There is a negative correlation between invisible disability and self-worth. This study ends with a need for invisible disability to be taken seriously so that people with them don’t have to emphasize them as much for valid assistance.

Karen Depauw constructs the significance of space in the context of the society in  “Space: The Final Frontier”: The Invisibility of Disability on the Landscape of Women’s Studies.” Through analyzing the breadth of subjects that gender studies encapsulate within intersectionality Karen Depauw noticed a lack of solid research in disability and how it connects to women, gender and identity. Published in 1996 Space: “The Final Frontier”: The Invisibility of Disability on the Landscape of Women’s Studies” is at the forefront of disability studies with Maureen Fitzgerald and Kathryn Paterson. By narrowing her view to the lens of space Karen Depauw is better able to articulate how disability dictates movement through space, also how disability can alter perceptions of space. Perception of space can be integral parts of identity and gender.  In working with space in relation to invisible disability she explains the ways in which spaces can differ based on interpretation. Her focus, particularly on mental disorders, illuminates how societies categorization of things and people can give stifling identities. Because of the individuality of invisibility disabilities, not to mention the different severities, it is limiting to categorize and clump disabled people. Furthermore to marginalize people because they do not fit into a normative format cramps them to the margins of society, into boxes that confine them. People with hidden disabilities are presented with two boxes, one in which they hide their differences and the other in which they may emphasise their differences in order to be believed and categorized as disabled.  Though there is more room for nuance than those two categories the exceptions are limited and never fully void of the decision that the individual with hidden disabilities makes about disclosure.  

The struggle of middle-aged women with chronic invisible disabilities who also work full time are argued by Margaret Vickers in “Unseen Chronic Illness and Work: Authentic Stories from “Women-Inbetween.”” Published in 2001 this article helps show many facets of being a woman and having an invisible disability. The eight women in this study explain some of the different difficulties. Like finding time for a doctor’s appointment, being assumed healthy at work, and trying to juggle a full-time career and caregiving. By adding in occupational difficulties Margaret Vickers shows another dimension of invisible disabilities effects. The added weight of gender is shown by the caregiver position that women are expected to fill, these mothers not only work full-time jobs but run households. Margaret Vickers explains how these roles stack up to burdens that leave these women not fully attending to themselves and struggling to show other people how much they are handling. Because hidden disabilities are not visible it adds to the dimensionality of whether people chose to believe in the legitimacy of these disabilities. Simple recognition of invisible disability would help in easing the weight of these women but in order to better understand their burdens society, gender roles, and other intersections must be scrutinized.

“My Body, my Closet: Invisible Disability and the Limits of Coming-out Discourse” by Ellen Samuels gives a more recent commentary on invisible disability. Published in 2003 this article focuses on disclosure of invisible disability. The approach of “My Body, my Closet: Invisible Disability and the Limits of Coming-out Discourse” is slightly unorthodox in its comparison of coming out in terms of sexuality and revealing an invisible disability. Through juxtaposing the two narratives “My Body, my Closet: Invisible Disability and the Limits of Coming-out Discourse” articulates the nuances of disclosure around invisible disability. Ellen Samuels explains how coming out keeps intact the binary that assumes heterosexuality and able-bodiedness are the norms and that it is necessary to reveal yourself as other if you are not strictly within those loosely defined boxes. One piece that is particularly addressed in revealing invisibility is the assumption with disabling that people are placed under but don’t necessarily want. In several people’s accounts disclosing an invisible disability are more about explaining it to others and less about accepting it yourself.  As addressed in “The Invisibility of Disability on the Landscape of Women’s Studies” is a pioneering article on disability studies with Maureen Fitzgerald and Kathryn Paterson the accusation of fraud around invisible disability is still an issue that keeps some people from disclosing at all. Ellen Samuels does an excellent job of explaining the weight and privilege that invisible disability holds: “Like racial, gender, and queer passing, the option of passing as nondisabled provides both a certain level of privilege and a profound sense of misrecognition and internal dissonance”(Samuels) Because invisible disabilities, in most circumstances, can be hidden there is consistent choice of disclosure. Unfortunately, both revealing and covering disability can have burdens. In elaborating on the issue of disclosure Ellen Samuels states a few times that people with invisible disabilities can “pass” as abled. However, even within just that word, she is still showing how disjointed they are from society and othered. People with hidden disabilities are in a weird in-between that fluctuates greatly by disclosure and can fluctuate with the severity of conditions on a day to day basis. Because hidden disabilities are a case by case dependent they have real tolls on people’s sense of identity and self-worth.

Specifically addressing mental disorders with the sector of invisible disability “Gender differences in mental health” address societal impacts on health. Through sharp analysis of statistics regarding men and women’s mental health, there are direct correlations to gender, particularly with anorexia and eating disorders. “Gender differences in mental health” show that not only is society ignoring mental illness they are often promoting it. The research, though published in 2007, holds many insights particularly in how gender relates to these illnesses. Mental disorder studies reflect how oppression can cause more people in a minority to develop them. Rooted in intersectionality, minorities are more vulnerable to mental instability and disorders. Another factor that affects mental disorders is the location, developing Arab countries women are more vulnerable and more likely to have mental instability. There is not one cause of mental illness or invisible disability and they can remain out of people’s perceptions. This can make invisible disability dangerous and endorse harmful societal norms. There needs to be recognition of invisible disability and wholesome approaches that don’t leave those with hidden disability awkwardly marginalized.

Identity is tightly associated with ability and disability. “”We don’t have a box”: Understanding hidden disability identity utilizing narrative research methodology” by Aimee Valera’s constructs the weight of hidden physical disability and explains the mental toll that it takes as well. By looking at the lives of six different people and their non-obvious physical disabilities, her study and analysis were written in 2010 provides insight into the complex layer of identity in relation to invisible disability. Core to Aimee Valeras’ argument like those of Maureen Fitzgerald, Kathryn Paterson, and Ellen Samuels is the pressure of disclosure. As framed in Aimee Valera’s study the six adults she picked chose to assimilate and push against the label disabled. Aimee Valera’s also takes the time to explain how intersectionality is essential to how people’s invisible disabilities affect their lives and identities. Researcher Aimee Valeras found about adolescent development of self-worth in conjunction with visible compared to invisible disability. One of the more recent and reliable studies showed that students with invisible disabilities had more emotional distress because of anxiety around possible exposure. To have an invisible disability takes people out of the obvious binary of able or disable: “The hidden disability experience, thus, falls in the misunderstood gap between the dominant disability paradigms, the medical model and the social model” (Valeras).

Much like the article “Gender differences in mental health,” “Why Don ‘t I Look Like Her? The Impact of Social Media on Female Body” reveals the specific impact society, especially social media, has on the mental conditions of college-aged women. Reviewing at this very specific study in 2013 of invisible disability in the form of mental illness it is easy to see how gender and white patriarchal society tie into the analysis of invisible disability. Kendyl Klein’s research show how unrealistic beauty standards have disproportionately affected young women. Additionally, her psychoanalysis provides insight into the direct ways in which social media harms women’s mental self-worth and mental stability. There are facts too that show the presence of eating disorders in college-aged women: “between 4% and 9% of college women have diagnosable eating disorders, but more frightening, 34% to 67% experience disordered eating at sub-threshold levels” (Klein). What Kendyl Klein articulates also is the endorsement of these unhealthy standards within America’s culture. The severity of eating disorders and mental illness have been dismissed by parts of society and the beauty industry. One particularly striking paragraphs of Kendyl Klein is the increased depression and suicide rates of those with eating disorders. This level of body dissatisfaction shows just how toxified societal views have become. In a personal account of Kendyl Klein, when she was struggling with body image, it is clear that her mental illness was spurred on by the media and society. Gender studies and invisible disability are tightly bound at the point of mental illness.  

Samantha Bassler constructs an argument that correlates music therapy with hidden disabilities in  “”But You Don’t Look Sick”: Dismodernism, Disability Studies and Music Therapy on Invisible Illness and the Unstable Body.” By first presenting invisibly and music therapy separately she is able to give a solid basis of both before connecting them. Similarly to many of the previous articles published before hers, published in 2014, Samantha Bassler explains the intricate issue of disclosure around hidden disability. Her article grapples with the impact that people’s disbelief around hidden disability has on people who struggle with them. What makes this article stand out is Samantha Bassler’s inclusion of music therapy as a potential avenue to help those with hidden disabilities. Samantha Bassler’s presentation of healing through music is that the music can not cure but rather helps the patient in dealing with their disability. Her final words on the matter of invisible disability tie it to feminism through looking at the normalization of society.

Tying feminism and a modern tone into the analysis of hidden disability Denarii Monroe explain the effects her own invisible disability has had on her life in her article “3 Ways My Learning Disability Affects My Life.” Written this year, Denarii Monroe explains the intricacies of living with an invisible disability.  One thing she addresses is the stigma people still have around disability and an avoidance to reveal her condition. Particularly focusing on the workplace she explains how revealing disability can cause discrimination, less pay or just not getting hired in the first place. Elaborating on occupational effects hidden disability can have she also explains the opposing argument that understanding can make a huge difference and communicating disability can relieve bad dynamics. Essentially reiterating that disclosure around invisible disability is really an individual decision and can help or hurt depending on the situation. Intersecting invisible disability to feminism Denarii Monroe argues that feminists are working for the equality of people and that people with invisible disabilities are among the marginalized. She creates an even stronger argument for intersectionality in her criticism of capitalism, patriarchy and the way in which conformity is institutionalized. The intersections minority people have are layers of oppression and greatly affects a person’s privilege. Truly intersectionality is at the core of starting to understand the complexities with individuals and even within invisible disability. Because there are many forms and accumulations of oppression that go unseen and acknowledged. Denarii Monroe explains the weight invisible disability can have on self-worth and confidence. Hiding disability and openly sharing it both come with their own burden. With sharing the information of invisible disability people sometimes doubt it’s legitimacy, categorizing the person as disabled or at least associating the condition with the person. To conceal the disability leaves the person open to the risk and vulnerability of exposure. Denarii Monroe concludes with the need to deconstruct societal boxes and embrace differences.

Intersectionality is core to understanding marginalization and different oppressions of society. Invisible disability and gender studies are better understood in the context of each other. The articles by Maureen Fitzgerald, Kathryn Paterson Karen Depauw, Ellen Samuels, Aimee Valeras, Margaret Vickers, Kendyl Klein, Samantha Bassler and Denarii Monroe provide a small window into an intersection of health and gender that is often overlooked. By focusing in on mental illness within the intersection of invisible disability and gender studies it is clear the influences society has.  

Sources:

Bassler, Samantha. (2014).  “”But You Don’t Look Sick”: Dismodernism, Disability Studies, and Music Therapy on Invisible Illness and the Unstable Body.” Voices: A World Form for Music Therapy.

Depauw, K. P. (1996). “”Space: The final frontier”: The invisibility of disability on the landscape of women’s studies.” Frontiers: A Journal of Women Studies, 17(3), 19- 23.

(2007) “Gender differences in mental health” Singapore Med Journal.

Image Fitzgerald, M.H., & Paterson, K.A. (1995). “The hidden disability dilemma for the preservation of self”. Journal of Occupational Science, 2, 13-21.

Klein, Kendyl M. (2013) “Why Don ‘t I Look Like Her? The Impact of Social Media on Female Body” Claremont McKenna College.

Megan Jones, “‘Gee, You Don’t Look Handicapped. .’: Why I Use a White Cane to Tell People That I’m Deaf,” Electric Edge, July-August 1997

Monroe, Denarii. (2016) “3 Ways My Learning Disability Affects My Life” Everyday Feminism.

Samuels, E.J (2003). “My body, my closet: Invisible disability and the limits of coming-out discourse.” GLQ: A Journal of Lesbian and Gay Studies, 9, 233- 255

Valeras, A. B. (2010). “”We don’t have a box”: Understanding hidden disability identity utilizing narrative research methodology.” Disability Studies Quarterly, 30(3), 1- 23.

Vickers, M. (2001). “Unseen chronic illness and work: authentic stories from “women in-between””. Gender in Management, 16(2), 62-74.