Exploring the Complexities of Disabled Masculinity: A Primer
By Keith Murfee-DeConcini
DSAB 605: Disability and Diversity, Spring 2018
“What makes a man a man?” This is a question as old as time itself, and one that does not have an easy answer. Is he a warrior or a businessman? A sensitive family man? An athlete or a monk? These are only a few examples of the vast complexities of classifying a man as a man. Above all else, it is universally accepted that he must be strong. Right?
One of the various minority groups that have been both overlooked and undervalued is the disability community, which is actually the largest minority in the United States and has been for some time, with the latest statistic from 2010 recording more than 56 million people with disabilities, almost 20 percent of the population (Brault 2012; U.S. Census Bureau 2012). This paper will begin to explore the complexities relating to masculinity with a disability. This is a fascinating topic to examine, because as Asch and Fine (1988) suggest, the two terms—disability and masculinity—are directly opposed to each other: “Having a disability [is] seen as synonymous with being dependent, childlike and helpless—an image fundamentally challenging all that is embodied in the ideal male: virility, autonomy and independence” (Asch and Fine 1988). So, the question becomes: can these two terms that conflict with one another coexist, and if so, how?
This paper will only be a modest introduction to this topic, which requires more in-depth study to be fully understood. At the outset of this exploration, the author would like to point out that similar analyses have been conducted into, and need to continue exploring, disabled femininity, as that topic is no less important than the topic this paper seeks to address (Asch and Fine 1988; Begum 1992; Browne, Connors, and Stern 1985; Deegan and Brooks 1985).
This paper is structured in the following way: first, it will provide some history of the Western culture of masculinity and the ways in which it relates positively, negatively, or both, to the cultural understanding of disability. Next, a group of disabled males who were interviewed share their insights on what it is like growing up disabled and having to contend with cultural norms of masculinity, which are in direct conflict with their status as men with disabilities. Following will be personal insights on the topics discussed by the author, who is a disabled male himself. Lastly, a conclusion will offer suggestions for where to go from here in understanding masculinity and disability in a healthier way.
This paper is primarily influenced by the following articles: “Coming to Terms: Masculinity and Physical Disability,” by Thomas J. Gerschick and Adam S. Miller (1995), and “The Dilemma of Disabled Masculinity,” by Russell Shuttleworth, Nikki Wedgwood, and Nathan J. Wilson (2012). Books that will be referenced include Phallacies: Historical Intersections of Disability and Masculinity, 1st ed., edited by Kathleen M. Brian and James W. Trent Jr. (2017), and The Body Silent: The Different World of the Disabled by Robert F. Murphy (1990). Other sources will be cited as well.
The author is indebted to Jonathan, Jovan, Cary, Nathan, and Rio for allowing themselves to be interviewed either in person or via email to provide their insights on some of the common daily experiences of disabled men in twenty-first-century America. All interview subjects were born with disabilities, and their ages range from the twenties to thirties, with the author being in his mid-thirties.
Author’s Note: In this paper, the terms disabled people, disabled men, people with disabilities, and men with disabilities will be used frequently. Although this can be jarring for readers, especially those trying to keep track of different terminologies and what they mean for a historical or personal context and for correct and incorrect usage, it could not be avoided given how many quotes this paper uses. This author is certainly not trying to say that all disabled people are male or that the first (or the only) thing to define a person with a disability is their disability.
A Brief History of Masculinity in Relation to Disability
The study of the concept known as masculinity began in the 1970s, alongside women’s history (including the study of femininity) and later, gender history (Tosh 1999). However, the concept of masculinity has been around in some form since the beginning of human history; the earliest references are found in the Hebrew Bible of 1000 BCE (see 1 Kings 2:2) and the Code of Hammurabi (around 1750 BCE). According to Raewyn Connell in her 2005 book Masculinities, what has framed the concept of masculinity has changed across the times and places in which it has been discussed and debated, and it is more apt to deliberate “masculinities” as a plural terminology rather than a single overarching concept.
Connell describes hegemonic masculinity as “the configuration of gender practice which embodies the currently accepted answer to the problem of the legitimacy of patriarchy, which guarantees the dominant position of men and the subordination of women” (Connell 2005).
It is important to understand in terms of this paper, and also in terms of our cultural climate that this view of patriarchy exists in the modern age, and in fact has always existed. There seems to be no escaping the classification of masculinity as hegemonic or toxic. This is problematic for a number of reasons, most chiefly the belief that masculinity has always been and will always be toxic. By seeing the concept through a sole mode of understanding, we become willfully ignorant of the plural nature of the concept in question.
Since the beginning of human history, the quest for perfection has been constant. Striving to continually better oneself toward a sense of lost perfection (see original sin in the Hebrew Bible, Genesis 3) was always deemed a worthy life goal. However, in the middle of the twentieth century in the United States, there emerged a new ideal to seek after, not one of recovering the ever-elusive sense of perfection but one of being average or normal. In 1943, artist Abram Belskie and obstetrician-gynecologist Robert Latou Dickinson revealed their joint work, the statues of Normman and Norma. Carved from white alabaster, the pair of statues were presented as the representation of peak normalcy (Cambers 2004).
This result was achieved by basing Normman and Norma on the average measurements of “15,000 men and women between the ages of 21 and 25”. The creators’ idea of normalcy excluded not only disabled people but also all nonwhite people, as their measurements were “compiled from a variety of sources, but decidedly, those of a white racial group” (Creadick 2017). The introduction of the terms Normman and Norma was actually a rebirth or reemergence, as the term normalcy was created nearly a century before, in 1857 (Creadick 2017).
The rebirth of the term gained prominence in the 1920s, when President Harding made the promise of a “Return to Normalcy,” a slogan that won him the presidency (Creadick 2017). This ideal permeated American society enough to be carried through War World I to greet the arrival of Normman and Norma. The arrival of the statues in the 1940s, running parallel to how returning veterans disabled through combat struggled to readjust to life in bodies that worked differently than before, served as an introduction to disability for the American public at that time. Certainly, Normman and Norma presented the ideal of being normal, or average, as the preferred counterpoint to disability.
How does the ideal of normalcy link to the concept of masculinity? Look no further than the year 1945, in which “an interdisciplinary team of scientists published the findings of their Harvard Grant Study of Normal Men, detailing everything from blood pressure to personality to home life to hair color in a popular volume titled Young Man, You Are Normal” (Creadick 2017). The ideal of normalcy was the new craze and considered to be what a man should strive for in his masculinity. While medical professionals and scientists of the day welcomed back the wounded warriors of fierce battles by promoting “a powerful new discourse about ‘normal men,’” postwar citizenship was still very much based upon a traditional form of masculinity. Through this postwar science, which became a hallmark of social consciousness in the 1940s, the masculinity of what it meant to be considered normal men “quietly invoked then loudly excluded disabled bodies from the social body” (Creadick 2017).
The history of masculinity is steeped in traditional values going back past the historical references already stated; schoolchildren learn early that in the prehistoric era men were warriors and hunters and women were gatherers. New studies have shown that gender roles were more equal in those times than previously thought (Adovasio, Soffer, and Page 2009; Caesar 1999; Croucher 2014; Devlin 2015). Regardless, traditional views of masculinity and femininity have been taught for generations. It is based on these views that we can begin to understand how the evolution of masculinity has run counter to the concept of disability.
The psychological classification of what was considered to be “deviant” in the early twentieth century was extremely broad, from a young male being considered deviant if he played with paper dolls or labeled mentally disabled for touching himself—as outsider artist Henry Darger was in 1904 (Trent 2017)—to the African male being demonized as Antinomian (against the moral order; Holcomb 2017). Any perceived threat to the traditional view of masculinity was handled by either being isolated or eliminated. This was the way American society felt comfortable dealing with the “undesirables” in their communities in the early to mid-twentieth century.
The emergence of becoming disabled through war service would further challenge the traditional notion of masculinity. Ever since the American Civil War of the 1860s, there had been Americans who became disabled through wartime combat. After that war’s conclusion, “hundreds of thousands of disabled veterans struggled to pick up the pieces of their shattered lives” (Kinder 2017). Here we see the core issue. Not only did veterans “struggle” after the war, their lives were “shattered.” Throughout history, when comparing disability to identity, the end result is always to view disability as a shattering of identity: in this case, shattered masculinity.
After the Civil War and subsequent wars, the prosthetics industry capitalized on repairing the wounded or shattered masculinity of the American soldier. The industry was perhaps the earliest corporate field to willfully manipulate disabled veterans with lofty promises of healing for commercial gain. The advertisements used by the companies to lure disabled veterans looking for “wholeness” to purchase their products set the tone not only for future advertisements but also for the social context of how to think about disability. For example, a prosthetics manufacturer in the second half of the nineteenth century asserted: “To conceal any physical defect is a natural aim. There is nothing so distressing, especially to a sensitive person, as the exhibition of any imperfection in his anatomy” (Kinder 2017).
The above invokes the idea that disability is a deviant trait that should be hidden at all costs. It is no wonder then that the term passing came into existence, if to conceal what offends is a natural aim. Even then, the nondisabled society expected people with disabilities to fit in with the rest of society while not making too much noise in the process.
Not surprisingly, masculinity is also linked to sexual potency. If a male could not perform sexually due to a disability, he was looked down upon quite harshly by society and considered only half a man. The ability to function sexually was seen as critical to his manhood and to the concept of healthy masculinity. During World War II especially, America had to confront this issue head on, as a lot of veterans returned paraplegics and challenged the traditional norms (then mostly reserved for married couples).
As Linker and Laemmli (2017) state, “At the conclusion of the Second World War, more than 600,000 men returned to the United States with long-term disabilities, profoundly destabilizing the definitions, representations, and experiences of male sexuality in America.” Hollywood at the time was trying to make sense of the ways in which a traditional married couple could reimagine their marriage, and project these ways realistically on the silver screen. Marlon Brando and Teresa Wright tried to do this, playing newlyweds Ken and Ellen in 1950’s The Men, for example. The Men had the apt tagline: “A completely new experience between men and women” (Linker and Laemmli 2017).
During this era, both on and off the silver screen, Americans tried to understand the extent of what it was like to come home from war and adjust to living in a paraplegic body. Although paraplegia was only one of the disabling conditions that could occur, it is singled out because it posed perhaps the greatest “threat” to masculinity for the first time in the era and loomed large in the public consciousness. This specific disability is being studied because of the societal and cultural norms surrounding it in the era. In a prevalent viewpoint, men were “increasingly regarded as the ‘more fragile and sexually vulnerable’ sex. As a man’s sexuality became increasingly ‘entangled with his sense of self-worth’, any inability to perform—reproductively or romantically—became a serious threat to his masculinity” (Linker and Laemmli 2017).
Regarding the traditional understanding of masculinity, this has always been the case; a “true man” who was well versed in his manhood was seen and thought of as a warrior, a protector, someone who was sexually potent and able to father children. The disabled veteran’s “plight” certainly ran counter to that narrative; a WWII paraplegic vet, Ken Wheeler, described the experience of becoming paralyzed: “Nothing much worse can happen to a man this side of death” (Linker and Laemmli 2017). It is no wonder that the terms “half a man” and “half alive” came to capture the anxieties of men being sent off to war if that horrible fate might befall them.
Thus, wars and their effects introduced many Americans to the struggles of becoming disabled and the ways in which disability can act as a foil of traditional masculinity. As critical as sexual function is to what it means to be a man, it is worth noting that “the sexuality of disabled veterans has been understudied, as most scholars have assumed that it is identical to that of nondisabled males… male sexuality is frequently assumed to be dichotomous: a man is either potent or impotent, with few intermediary gradations” (Linker and Laemmli 2017).
At the same time, however, while some people were curious about the sexuality of disabled men, veterans or not, the sexual expression innate in disabled men, like their nondisabled counterparts, created a very pronounced uneasiness within the able-bodied public of the time and can still be felt today. The root of this can be traced back to public figures such as noted sexologist Alfred Kinsey, who “found the sexual needs of the physically disabled aberrant, beyond the possibility of normalization” (Linker and Laemmli 2017). He believed this to the extent that in his groundbreaking work, Sexual Behavior in the Human Male (an 800-page book), he only mentioned disability once, writing, “Persons who are deformed physically, deaf, blind, severely crippled, spastic, or otherwise handicapped, often have considerable difficulty in finding heterosexual coitus. The matter may weigh heavily upon their minds and cause considerable psychic disturbance. There are instances where prostitutes have contributed to establishing these individuals in their own self-esteem by providing their first sexual contacts, finally, at lower social levels there are persons who are… so repulsive and offensive physically that no girl except a prostitute would have intercourse with them. Without such outlets, these individuals would become even more serious social problems than they already are.” (Kinsey 1948; Linker and Laemmli 2017). It is through beliefs held by people like Kinsey and others that “the pervasive stigma [became] attached to disability and sex’” (Linker and Laemmli 2017).
This stigma strikes at the heart of masculinity and is in a very real sense more disabling to a man’s manhood and his self-worth than the actual disability he has. Whether we agree with the pillars of traditional masculinity, or we find them incredibly narrow-minded in their focus, or even a little bit of both, the fact remains that the traditional concepts of gender classification have permeated societies and the ways in which those societies have functioned certainly for centuries, if not since the beginning of recorded human existence.
The above history is by no means complete, nor was it written to suggest otherwise. Even if this paper’s sole aim were investigating the history of disabled masculinity and how that term is constantly at odds with the traditional view of masculinity, the topic is too rich in detail to provide an adequate summary in a few pages. Before we move on, it is worth noting where one possible root of stigmas against disabled people, and in particular disabled males, originated.
Christianity and Ancient Greek Views on Disability
Early Christendom, in its belief in an afterlife of torment (i.e., Hell), depicted a landscape of punitive suffering, of bodies out of control due to violations of the natural order. This is a direct correlation to both ancient and modern understandings of disability, as Henning in her chapter “Weeping and Bad Hair” found in Phallacies states: “In addition to mirroring contemporary ideas about punitive suffering from the Roman judicial context, the punishments of early Christian hell also mirror the bodily suffering of persons with disabilities” (Henning 2017).
We can glimpse how the root of fear surrounding the concept of disability and people who live with disabilities stretches back to early religious teachings, as Henning explains that “by threatening disability as a punishment, the bodies that we find in hell intensify and reinforce the ancient idea that bodily difference was a punishment for sin.” Horrible visions drive home the point that disability is a torment. Quoting from a lecture by Candida R. Moss (2014), for example: “We find sinners with lacerated or amputated limbs, mirroring the large number of ancient persons who lived without the use of one of their limbs.”
While the lecture from which the above example was taken suggests that those who lived with amputation were not looked upon as deviant in ancient times, as they possibly would be in our time, which does not bode well for the modern conceptualization of disability. Again, the ancient teachings have influenced much of the early foundations of masculinity and likewise our modern interpretation. “Men’s bodies were characterized as strong, hot, dry, and compact, or impervious to penetration, whereas women had bodies that were weak, cold, moist, and porous” (Henning 2017). This belief lends itself to the assertion made by the Greek philosopher Aristotle that “women are incomplete males whose bodies have simply never reached the level of heat, dryness, or solidity that characterize masculinity” (Henning 2017).
Throughout the tours of Hell that helped shape early Christian teachings and captivated ancient audiences in an effort to get them to turn away from their sins, we find ideas borrowed from the Greeks: “The sinful body is abnormal, dysfunctional, weak, penetrable, porous, and leaky. In short, the unrighteous have become disabled and female in hell” (Henning 2017). This quote is an example that in the early Christian teachings, it was taught that the body cannot be both disabled and masculine.
It is crucial to look at beliefs that have exerted a great influence on history, from the most ancient times to the mid-twentieth century and beyond. The beliefs of the past not only affect the present, but also impact future discourse in relation to gender norms and ways in which levels of function help shape the concept of a healthy identity.
Context of Field of Study and Interviews
Following the lead of Asch and Fine (1988), Harlan Hahn (1989) expanded upon the purported inherent conflict between disability and masculinity. Hahn, who lived with post-polio syndrome, remarked that the very nature of the conflict between the two terms required “some kind of resolution because many of them (men) tend to identify on both personal and political levels with hegemonic notions of masculinity such as independence and bravado rather than identifying as disabled.” He suggested that, to solve this dilemma, men with disabilities had to reconceive the very nature of their identity. “By first viewing their difference as aesthetically pleasing; by exhibiting strength of character through embracing their physiological weakness; and by lastly pursuing both personal and political relations with people who are more interested in their sensitivity, purpose, and commitment than in idealized masculine characteristics of personal power and physical strength” (Hahn 1989; Shuttleworth, Wedgwood, and Wilson 2012).
Intrigued by Hahn’s insights, Gerschick and Miller in 1994 further elaborated upon those insights by conducting the first research study of disability and masculinity, published the following year (Coming to Terms, Gerschick and Miller 1995).This study set forth to introduce the field of study, highlighting disabled masculinity from a critical perspective while linking to Connell’s definition of hegemonic masculinity, cited earlier in this paper (see page 2; Connell 2005).
As mentioned, there are several different types of masculinity, and looking at some of them can provide context for why most studies of masculinities focus on hegemonic masculinity. As Shuttleworth, Wedgwood, and Wilson in their 2012 article The Dilemma of Disabled Masculinityexplain: “Subordinate masculinities are those masculinities that are negatively related to hegemonic masculinity, internal to the gender order, best exemplified by gay men, whereas marginalized masculinities are negatively related to the gender order in terms of some other social category or relational structure such as class, ethnicity, or impairment. Multiple masculinities thus exist in relationships of context and negotiation to one another” (Shuttleworth, Wedgwood, and Wilson 2012) .Hegemonic masculinity encompasses the others by exerting a combative force upon the gamut of the other masculinities. There is little wonder then why hegemonic masculinity or toxic masculinity has permeated the Western social consciousness in the perverse way it has.
In their 1995 study, Gerschick and Miller developed a framework of terminology to help disabled men tackle hegemonic masculinity through various responses. These responses are reliance, reformulation, and rejection. In concluding their study, based on interviews with ten men with acquired impairments, they found that “some disabled men continue to rely on hegemonic masculine ideals for their sense of self, some reformulate these ideals in line with their limitations, and others reject hegemonic masculinity, formulating instead an alternate masculinity for themselves” (Gerschick and Miller 1995; Shuttleworth, Wedgwood, and Wilson 2012). However, they also noted that “none of their participants wholly fit into one of these response types” (Shuttleworth, Wedgwood, and Wilson 2012). The 1995 study gave a scholarly voice and accompanying method to “explicitly link disabled men’s dilemma to the feminist and masculinity studies agendas” (Shuttleworth, Wedgwood, and Wilson 2012).
In the United Kingdom in 1999, Tom Shakespeare’s larger conceptual study of disability and sexuality deepened the analysis of the dilemma in which nearly all disabled men find themselves. His pioneering work acknowledged that the various contradictions which shape our understanding of disabled masculinity and the diverse experiences of disabled males are not felt through one universal experience. Rather, as he explains it, “Disabled men [not only] differ from one another, but . . . individual disabled men receive and embody contradictory and confusing messages” (Shakespeare 1999).
While the early work on this topic from the 1980s and 1990s, some of which was mentioned here (additional ones are cited in the references section), is greatly appreciated in laying the groundwork for future scholarly work, there has emerged a central issue: the lack of distinction regarding impairments and how they might relate to the concept of disabled masculinity. As Shuttleworth, Wedgwood, and Wilson (2012) conclude, “Indeed, the minimal attention paid to differences in impairment, as well as to intersecting identities such as ethnicity, class, and sexuality, presented a rather one-dimensional picture of disabled men.” This one-dimensional picture, when displayed alongside further calls for disabled men to constantly reinvent themselves and pay no mind to external pressure, only helps “downplay the limited power disabled people have to influence how they are viewed by many nondisabled people” (Wedgwood 2011) and “how we might work to change these constraining structures at a societal, rather than individual, level” (Shuttleworth, Wedgwood, and Wilson 2012).
The men featured in this paper were born with their disabilities and diagnosed with them shortly after birth, except one who was officially diagnosed later in life, though his disability was always present. All of the men have different jobs and academic fields of study. They are all friends of the author; the length of the friendship ranges from one year to more than twenty years. All interviews were conducted with the same questions. The author attempted to give equal weight to all interviewees’ responses, and all answers quoted in this paper were edited for length and language purposes. Some men volunteered information on their sex lives, though no sexual questions were asked during the interviews. None of the men asked for their names to be changed. Only first names will be used.
Cary has mild cerebral palsy and is an amputee. He learned about his disability early in his childhood, but even before that, he always knew he was different. He also feels like he had a clear understanding of the differences between masculinity and femininity from an early age through the lens of gender norms of the 1990s. When asked about his disability identity, Cary does not feel that he has a disability identity but rather that his disability is a part of his identity. In his own words, “Social norms and disability are interesting subjects, because many social norms cannot be met if you’re physically disabled, specifically norms around masculinity. I say this because any deficit of any kind can be looked at as emasculating.”
In terms of how his view of his personal masculinity has been influenced by his disability, Cary feels that his disability has impacted his masculinity in a major way. Grappling with stereotypes surrounding masculinity, such as strength and athletic ability, hunter rather than hunted, these parts of life as a traditional male have been fairly difficult to resolve living with a disability. He says, “My body is physically flawed and that has had a major impact on my view of myself as a man. I’ve always felt comfortable as a man, I just wish my body was able to perform masculine tropes. I wish I could’ve played baseball or competed in any number of athletic pursuits, but when you’re disabled, athletic dreams die early.”
Over the years, Cary believes that his understanding of masculinity has progressed to the extent that he realizes his disability does not make him any less of a man than a nondisabled male is. He reflects that “I know my limits strength-wise, energy-wise etc. . . . I’ve been in romantic relationships since age 18. I’m sexually active. I can’t lift 350. I can’t hunt. I can’t play football anymore. But I don’t need those abilities to be a man, because I am a man regardless, inherently.”
These insights took time to develop, and a further question asked in the interview spoke to that, focusing on how his view of masculinity has changed in the last ten to fifteen years. Cary concluded, “I have definitely gained a more positive view of my masculinity and my overall self… That comes from a lot of personal work trying to love and accept myself for who and what I am. I have my good days and bad days. It’s a daily struggle, but I’ve made many positive strides and have no doubt in my masculinity or abilities in many respects.”
He believes that people with disabilities, men in particular, must have more reverence for the traits of fortitude and resiliency and that ableism (discrimination against people with disabilities) exists and happens in everyday life. To combat this, in addition to having a positive self-identity, Cary advises men with disabilities to remember: “they are worthy, they are able, they can have a fantastic life as long as they accept themselves and the world with love and respect rather than bitterness or anger.”
Jonathan was born with his disability, but did not get diagnosed until 2002, while he was in high school. The diagnosis that no one could figure out until then was autism spectrum disorder, although he still prefers the older classification Asperger Syndrome. When Jonathan found out about his diagnosis, it gave him a sense of relief, as some schooling and social cues proved difficult for him.
He does not recall when he learned about the term masculinity; however, he did appreciate that it was presented to him as a binary. He was taught that masculinity = male and femininity = female, and that was very clear to him at the time. It identified him as masculine because he was born as male. In his words, “It was weird learning later in life that there were men who were more feminine and women who were more masculine.”
When asked how he felt social norms of traditional masculinity had influenced his identity as a disabled male, Jonathan did not feel that they had at all. He felt that how he was taught about masculinity had a neutral impact on his identity. He does cite his disability and his religious upbringing (in his case, Christianity) as strong influences on his sense of self and says, “Because I grew up in a Christian, heteronormative household, I thought heterosexuality was the norm. The traditional religious teaching influenced me to consider anything different from what I grew up to be different and/or sinful. And I often thought in a binary way, so I accepted it.”
Circling back to ways his understanding of masculinity when he was younger influenced how he sees himself today as a disabled male, Jonathan responded that he did not think his understanding of masculinity influenced his disability. The opposite was true: “I think my disability filtered the ways I was taught to be masculine. Because I didn’t always understand what was culturally appropriate for men, it took a lot of observations in social situations. Then I took what I liked and discarded the rest.”
When posed the question of how the two concepts of disability and masculinity have changed or influenced his thinking in the last ten to fifteen years, he paused, collecting his thoughts before answering. “I think the progressive thought regarding masculinity compelled me to rethink how I viewed masculinity: still keeping with the core tenets of Christianity but with a lot more compassion. What I did not realize was how the concept of masculinity was more harmful than I originally knew. It projected that if a woman demanded the same equitable treatment in areas such as education, employment, and healthcare, it would imply she’s not a ‘real woman’ and less concessions are made for her than if she were male. Not only did I view it unfair, but it was certainly something that could be fixed.”
Jonathan concluded with his summary of optimal masculinity as being regarded as masculine while also being compassionate. He says that he achieves this when he clearly presents himself “as a person who knows of his advantages and would rather look out for the less fortunate instead of making those people stepping stones.” In keeping with his Christian upbringing, he stated that the way he believes society can improve their understanding of masculinity in order to help foster healthier identities for males is “by making respect and dignity unconditional.”
Jovan was born with cerebral palsy, and even though he recognizes that, it has brought him obstacles throughout his life. He reflects that it has also “given me plenty of insight into the human condition, emotional intelligence, and empathy for others which I do not think everybody has.”
Most young boys try to outperform their limits, and Jovan acknowledges that this was true for him, even more so than for his able-bodied peers. Wanting to fit in on the schoolyard is certainly understandable. He said, “My physical limitations were always there, but I kept testing my limits, participating in sports and as many ‘abled-bodied’ activities as I could, to prove to myself and others that I was a ‘regular boy.’ I would fall often, and get hurt plenty, but I would pretend nothing was wrong and kept trying to do things that in hindsight were particularly dangerous with my condition, but I did them anyway . . . because I needed to show to others that I could be a ‘regular boy,’ a strong boy, or young man who did not needed to be cared for, excluded or treated differently.”
When asked if masculinity had a positive or negative impact on his identity as a disabled male, Jovan stated that both happened. Although he believes he had a happy childhood with his attempts to keep up with his “abled-bodied” friends, he spent more time underscoring the negative aspect that masculinity had on him, echoing the above answer. He said, “Trying to comply with the idea of masculinity kept me from asking for help many times and for many years that I actually needed help. I would have experienced a little less pain, frustration and disappointment if I had accepted that I was disabled, and that physical impairments and limitations did not make me less of a man.”
Some of this confusion of attempting to reconcile trying to be normal while in a disabled body hit Jovan before his teenage years, while some followed him through those years. The normal teenage anxiety strikes then and is only compounded by living in a disabled body. Masculinity is taught as being able to protect and to help build, so those ideas caused Jovan even more anxiety. As he tells it, “I was afraid that because I was not as able to walk, run, drive like my abled-bodied counterparts, I would not be an adequate boyfriend or partner to women. So much about being a ‘man’ revolves around being able to protect women, being able to build or fix things around the house, that for a long time I felt inadequate to be a boyfriend, husband or father because I felt that I could not do those tasks in the same way or to the same extent as most men I knew.”
Even with very supportive parents like Jovan’s, whom he says never tried to “push a ‘you have to be masculine and strong to be a man,’” the unconscious pull to be “normal” is strong for young boys and men. This echoes back to the “ideal” poses of Normman and Norma in the 1940s. Not until his adulthood would Jovan discover a more robust sense of masculinity, one on his own terms, by embracing his disability. This embracing not only gave him more empathy for people going through similar situations, it also taught him some valuable insights about masculinity: “Asking for help is just as manly as trying to do things independently. Being a good man is all about being a good human and so is showing emotion or vulnerability, which is just as important to being a man as displaying physical or mental toughness.”
When he was asked during the end of his interview whether hegemonic masculinity has influenced the power imbalance between the nondisabled society and people with disabilities, Jovan agreed that there was a connection between the two: “Masculinity is so often measured in terms of physical strength and toughness. Similarly, strength and toughness are equated with leadership ability and power. Therefore, the stronger you are perceived to be, the more power you are given. People with disabilities, like women, are considered weaker and more vulnerable. This is equated with a lesser ability to lead and therefore less power is given to those communities.”
One of the most interesting notions that Jovan touched on was his belief that even with the power imbalance, physical strength and ability are perhaps not as critical as they once were: “In this day and age, physical strength and ability are not nearly as important as intellectual prowess and emotional intelligence. Once you convince yourself that knowledge not strength is the true source of power, then society’s attempts at emasculation of [disabled men] or [subordination] of women will fall short.” This is not necessarily true in every situation, as the power of positive belief will be unable to successfully push back against society’s every attempt to preserve the status quo. It is still an interesting social theory to ponder; that we as a society may be reaching a point where the values of intellectual prowess and emotional intelligence outweigh those of physical strength and ability.
Nathan is a man with cerebral palsy and epilepsy. He believes that the first time he heard the word masculinity was when he was a teenager. As such, he naturally took it to mean “strong” and “macho.” When asked how the social norms of masculinity have influenced his disability identity, he stated that, “I feel that the social norms of masculinity have had a positive impact on my disability identity because I feel that the social norms of masculinity are outdated and should be changed. I believe that being an accomplished disabled cross-stitch artist (a form of sewing) crosses many social norms and gender role stereotypes and is my way of actively starting that change in the world.”
Nathan said that he did not have much to say on the theories of masculinity in relation to disability because he only started pondering them recently. However, he did say definitely that he believes the societal understanding of masculinity is far too rigid and needs to change. In his closing words on what he thought was important for disabled males to know in shaping their own disability identity alongside masculinity, he stated: “It is important for disabled males to understand that masculinity is NOT a one-size-fits-all label.”
Nathan then reflected on his own emerging disability identity: “I myself have always felt that I have never fit into the ideal masculine stereotype that society has set. I am strong, courageous, and protective and masculine in many ways, but I am also feminine in others such as being emotional, empathetic, and patient. I as a disabled man have felt I am more feminine than masculine, but I believe that a strong combination of both have helped me build my disability identity.”
Rio has spina bifida, which he did not become aware of until he was two or three years old. Not walking for him was normal. It wasn’t until he kept breaking his legs trying to walk that he realized he was disabled. He is a wheelchair user.
Growing up, his understanding of masculinity was always negative: the term was associated with the word machismo. Therefore, Rio says, “I never really understood it to be the healthy side of growing up to be a man.” In terms of relating to the social norms surrounding masculinity, he views himself as quite antithetical to them, relying more, as he puts it, to “tread the line between masculinity and femininity.”
Not surprisingly then, when asked about interacting with men who believed in the traditional view of masculinity, Rio replied, “I’m not really the kind of guy to surround myself with those who have an obnoxious amount of masculinity. Not because I feel threatened, but to me, being a man isn’t about the car you have or the size penis you have. In all honesty those kinds of men disgust me . . . I believe manhood is mainly about finding your honesty and your vulnerability.”
Rio’s father was the one to teach him a healthy form of masculinity or manhood. To his father, true manhood was represented in honor, respect, and responsibility, and he wanted to instill these values to Rio as he grew up. Rio reflected on other concepts that helped him expand his understanding of what was taught to him by his father: “It wasn’t until I was in high school that I learned the psychological term of ‘Masculinity.’ And the Jungian belief of the balance of Masculine and Feminine, Animus and Anima. Nowadays, my specific manhood is the ability to have both the Anima and the Animus within me, the capability of being able to be firm in your sexuality, but also vulnerable as well. I feel my style of peacocking (strutting of manhood) would be more taking after the renaissance poets, who embraced their femininity in the wild clothes they wear and the detail to grooming. In this, I feel balanced and grounded in my masculinity.”
Rio’s disability has influenced his understanding of masculinity. Rio elaborated that “masculinity and my disabled identity are separate aspects to my being, [although] they do bleed into each other. To me, in my quest for manhood, independence is how I become more of a man. Being able to put my own clothes on, wash myself, cook for myself, clean the house by myself, groom myself, tailor my own specific style, etc. All these things help me achieve those ideals of honor, respect and responsibility.”
When he was asked about navigating activities not typically done by people who use wheelchairs, Rio had an answer ready: “If I want to do something that seems not easily done by a person in a wheelchair, I will make it my goal to figure out a way I can do it, whether it be surfing or rock climbing. I see myself as MacGyver of the disabled community, and overcoming these obstacles makes me feel freer, more in touch with my manhood.”
This grounding in masculinity was evident in his answer to the question of reconciling his disability identity with the concept of masculinity. “Well, to me, there is nothing to be reconciled. Because, in truth, I don’t really have that large of a disabled identity; if my ‘Disabled Identity’ would be anything it would be like a shell, i.e. my Chair, which is always second to my giant of a personality. And when it comes to flirting, or dating, my personality and my charm are the ones that mainly do the talking, not my disabled [identity]. I’ve found in relationships this mainly comes out later in the relationship.”
Looking at the concept from a different angle, when asked if his concept of masculinity has been changed because of his disability, Rio said with animation, “I believe it has . . . mainly in relationships and my search for my sexuality. Not being able to feel below the waist has taken away those primal urges to (for a lack of a better term) ‘get my rocks off.’ I’ve met a lot of men that are enslaved by their penis . . . I rely solely on giving, which in a beautiful way, gives me pleasure. But it’s not even just in bed. I feel not being enslaved by my genitals has made me into a more intent listener and patient with a lover, which has worked out quite well for me.”
In wrapping up the interview, Rio pondered the question of the importance of a positive self-image as a disabled man. “It is as important as waking up in the morning and remembering to breathe. Every man and human being deals with insecurity and self-image. Once we realize that, it makes things a bit easier. But, having a strong sense of self and a will to do the self-work is what also gives me strength as a man.” He expanded on the question of how society could improve their understanding of masculinity to help foster healthy identities with his own ideas: “I think society needs to embrace vulnerability and honesty more. The days of the stone-cold John Wayne are dead. We are in a time of mass miscommunication, and we need to be open and communicative about how we feel.”
In closing, Rio offered his advice to fellow disabled males searching for ways to shape their disability identity alongside healthy masculinity. “Being able to be honest with yourself and how you are feeling on a day-to-day basis and able to communicate that, is how you get what you want and deserve from this world.”
My disability was always a given. Being born three months early while weighing two pounds and eleven ounces will do that to a person. Before I understood what a disability was or the fact that I had one, I remember experiencing a lot of “dysfunction” with the right side of my body. I.e., when I would try to walk, only my left arm would move side to side, while my right leg struggled to move at all. Wanting this “dysfunction” to go away and quickly, I tried (in vain) to expel it from my body by biting one of my arms in hopes of releasing the tension which was surely the root of the dysfunction, or so I thought. In reality, nothing like what I wanted to happen ended up happening. All I got was scolded by my mother repeatedly because I kept doing it. She was freaked out in her own right.
It wasn’t until later when I found out I had this neurological disability called cerebral palsy (CP) that things began to make sense. I had a mild case of it, my mother assured me; however, my entire right side was affected, which made the exact diagnosis mild cerebral palsy hemiplegia (paralysis of one side of the body). My body had never and would never function in a truly normal sense. Before I even tried to speak my first word, I was already classified as “disabled” and therefore “not normal.”
What is interesting about my diagnosis is that years later, when I began studying it, I discovered that the medical doctors were using a broad term when they classified it as mild. Researching CP (which is actually an umbrella term for a group of different neuro-motor disorders) through the 2nd edition of the Johns Hopkins health book, Cerebral Palsy: A Complete Guide for Caregiving, I found out that at least 95 percent of what could happen to a person with CP does not affect me. For example, when people think of a person with CP, they usually picture someone using a wheelchair, and while many people who have CP use a wheelchair or some other form of mobility aid, I do not. I am completely ambulatory.
I am not glorifying my situation of having a mild case of a neurological disability. Rather, I am saying that discovering this knowledge in the last five years has set up a kind of internal personal crisis. If so little of my disability is noticeable, then do I have the right to claim this disability as a part of me? In the past, I dealt with this by referring to my disability in a joking manner as “C.P. Lite” (Murfee-DeConcini 2014).
The best way that I can sum up where I fit is that I straddle two communities at the same time: one foot in the disabled community and one foot in the nondisabled (or “temporarily abled-bodied”) society. The fact is, CP affects me in myriad ways, most of which are not apparent to the average person, except for my speech impediment which is a clear signal that something is “not normal” about me. When I speak to someone new, many people mistake me for being drunk or on drugs; some even mis-gender me on the telephone as a woman.
Cerebral palsy is, I believe, a universe within itself. There are numerous variations on how CP can influence the body. The main classifications of CP are spastic (exaggerated or jerky movements); athetoid or dyskinetic, which is a mixture of hypotonia (low muscle tone) and hypertonia (high muscle tone) that causes muscle movement to fluctuate—this is close to my type of CP; and ataxic, which results in shaky involuntary movements; and then there’s mixed, which can be a combination of any or all of the above. You can have CP as monoplegia (one limb is affected), diplegia (two limbs are affected), hemiplegia (one side of the body is affected), triplegia (three limbs are affected), quadriplegia (all four limbs are affected), or double hemiplegia. Then there is the degree of involvement, such as mild, moderate, severe, and profound. These are just multiple classifications of one type of disability, all of which fall under the rubric of CP (Cerebral Palsy Alliance 2018; Miller and Bachrach 2006). A person with profound spasticity will look very different from a person with mild hypotonia. Interestingly, all these variations in body tone are caused by “insults” to the brain, as one’s body tone is determined by one’s brain and not the amount of exercise one does.
Alongside those classifications, there is a whole complicated list of secondary effects of CP, which include but are not limited to: seizures, dysphagia (problems with swallowing), attention deficit disorder (ADD), learning disabilities, intellectual disabilities, sleep issues, autism, depression, and so on (Cerebral Palsy Guidance 2018; Miller and Bachrach 2006). Again this is only one disability, which can be associated with many secondary effects, each of which is a type of disability in itself.
Like most of the disabled men interviewed for this paper, I do not remember when I first heard the term masculinity or how it was taught to me. However, I probably equated it with James Bond, and that’s most likely not the best male role model for a young kid. Due to my disability and how I was treated because of it, I grew up with a lot of anger, which also played a role in my early understanding of masculinity. One of the earliest triggers of my anger was a schoolyard taunt that I must be gay or an alien because I talked funny. For an eight-year-old this was very upsetting; whereas to someone in their mid-thirties, it is actually pretty funny how tame that “insult” seems. Still, as a kid and even now as an adult, I hated being looked down upon and thought less of by my peers. In those early years, the concept of masculinity was equated with being or acting tough, and as a male, especially one with disabilities, I desperately wanted to be tough. So I got angry and that made me feel powerful.
Entering my teenage years and being spurred on by hormones that I did not understand, along with the fact that I could not get a date to save my life, only deepened my anger and pushed my understanding of masculinity onto this negative domain. After high school, my anger and my negative understanding of masculinity was primarily fueled by my loneliness and sense of isolation. I wanted to be treated like everyone else and realized that was not going to happen most likely. I was facing the rampant influence of ableism in everyday society, especially regarding interpersonal relationships. While the loneliness of those years still lingers, thankfully those days are mostly behind me, and my understanding of masculinity has evolved in a way much like Rio’s.
The teaching that Rio received from his father on the subject of masculinity resonated with me, that “true manhood was represented in honor, respect, and responsibility.” This is very close to the teachings that my own father tried to convey to me as I was growing up. No matter what one’s body looks like or what one’s speech sounds like, one can be a man in terms of the most important aspects of honor, respect, and responsibility.
Rio also spoke of independence as a clear aspect of masculinity. Becoming independent is a major goal of anyone with a disability, and to a man this is perhaps even more important. As I have become more independent, able to care for myself as any adult can, my feelings of being a man have strengthened. I feel the strength of my masculinity through my independence.
Rio mentioned his “style of peacocking”—his “strutting of manhood.” That reminded me of my strong interest in theatre and the performing arts, which has become a big part of my life. As such, my wardrobe has become increasingly theatrical and vibrant, yet another way I show off my sense of masculinity.
Like Jonathan, my religion is very important as a guide for my moral compass and for developing a healthy sense of self, including a positive vision of masculinity. Still, in doing research for this paper, I have come to understand a point made by Cary, in which he stated that traditional religions put forth “the idea that the disabled need pity and favor to earn a step up Jacob’s ladder.” While traditional religions (especially Christianity) have come a long way from the horrors encountered in early descriptions of Hell where disability is a torment to be feared, they still have a long way to go to fully embrace the inclusive diversity that is humanity.
Unlike humans, disability does not discriminate. It can impact anyone at any time in their life. In fact, if humanity is looking for a model to help free themselves of discrimination, humans have only to look at the role disability plays throughout existence. Not only can a disability impact anyone at any time, it has a long track record of doing so, from the Everyman to the famous among us.
Robert F. Murphy (1924–1990) was an American anthropologist and professor who, in receiving medical treatment for a persistent anal spasm, eventually discovered a slow-growing tumor of his spinal cord that would unrelentingly lead to impairment of his central nervous system and greater loss of bodily functions over the last sixteen years of his life. He wrote about his discovery and his adaptation to his newly “damaged” self in his memoir, The Body Silent: The Different World of the Disabled. Murphy (1990) describes his readjustment to society after being in the hospital for some time: “The recently disabled paralytic faces the world with a changed body and an altered identity—which even by itself would make his reentry into society a delicate and chancy matter. But his future is made even more perilous by the treatment given him by the non-disabled, including some of his oldest friends and associates, and even family members.”
In the animal world, treatment of the disabled can be quite different. In a 1988 article, “Impairment as a Human Constant: Cross-Cultural and Historical Perspectives on Variation,” Jessica Scheer and Nora Groce quote a 1971 finding from noted primatologist and anthropologist Jane Goodall. Goodall discovered “general group tolerance for Gombi Game Preserve chimpanzees having weakened legs caused by polio. Their mothers and siblings provided them with special care. An older male chimp, who had lost complete use of his legs due to polio, was fed and kept company by his siblings until his death” (Goodall 1970; Scheer and Groce 1988). Others found similar findings with other groups of animals (Berkson 1970, 1973, 1977; Fedigan and Fedigan 1977; Lindburg 1969).
Humans, despite viewing themselves as the most advanced species, do not always demonstrate such care toward their relatives with disabilities, never mind toward the disabled society outside of their own family. It is a fascinating revelation to discover that animals, considered by some people to be “lesser beings,” may actually take better care of their disabled group members than many humans do.
Entertainment can play a major role in how people with disabilities are perceived by the nondisabled society. Stories about disabled people are often written as “feel-good” pieces rather than real news stories that make you think deeply; or if one thinks anything, it is most likely, “Well, at least my life isn’t as bad as theirs.”
Furthermore, disabled characters in television or movies are rarely played by actual disabled people; rather they are portrayed by able-bodied actors who can revert to their able-bodied state at the end of the day. All of this plays a part in how a disabled man may see himself. How people like himself are portrayed or treated on a daily basis can influence his behavior and overall sense of himself on an unconscious level.
Society’s deep-rooted fear of disabilities is revealed in how the nondisabled society treated people with disabilities for centuries, most notably in the Eugenics movement in America of the late nineteenth century to the middle of the twentieth. (Black 2012) This sad movement showed humanity’s extremely unhealthy obsession with chasing the ever-elusive state of perfection. This desire to eliminate perceived weakness from the human gene pool should be seen as a profound embarrassment rather than a noble goal. If all the disabled people on the planet right now were eliminated, that would not end disability. Disability would continue like the passage of time. Disability is as natural to human life as breathing.
There is a saying: “If you have met one person with autism, then you met only one person with autism.” The same could be easily correlated to all interactions with people who have disabilities. Each disability manifests itself differently in each individual.
And the same might be true of masculinity, too. Each individual displays his own approach. This paper has highlighted the dangers of toxic and hegemonic types. Toxic masculinity existed long before recent social movements like Time’s Up and MeToo brought it to the forefront of public consciousness, and it remains a very big problem. Also of concern is the type of thinking that equates masculinity with only the toxic part of it, which merely compounds the conflict in the current social discourse that this country is having.
While some people push the belief that all masculinity is toxic (Cooper 2018), others question that belief (Matthews 2017). There are both male and female voices that oppose the notion that men are inherently bad and are chiefly to blame for the concept of toxic masculinity (Goodwin 2018; Lohr 2018).
First of all, notions of masculinity reach back hundreds or thousands of years in Western culture, and those notions have been taught across generations through social and cultural norms. An example of this is when a young boy is told not to play with dolls or anything “girly,” that he should only play with action figures and army men, and not to cry because real men never cry.
Ernest Hemingway, the great example of male-macho-masculinity, succumbed to this stereotype. In the final chapter of Phallacies (“Masculinity and Disability: Ernest Hemingway, the Man, the Girl, and the Genius”), we encounter the literary titan of America traumatized by a childhood which shattered his sense of gender identity. Even with his literary genius, he could not escape or make peace with the demons of his past; thus, his life eventually led to a tragic end, when he killed himself at home (Slaughter 2017). It is true that, as Murphy points out, “we can no more escape our pasts than can the most primitive of our subjects” (Murphy 1990).
Conflict within is extremely tough to work through, especially when the young boy or young male has been shunned repeatedly in the past for acting against the expected norms, regardless of how unrealistic they are. SUNY Professor Michael Kimmel described this conflict as “the tensions in men’s heads between what it means to be a good man and what it means to be a real man.” In an interview, he told a story about a time he addressed a group of cadets at West Point and asked them what they thought was the difference between being a good man and a real man. When he asked them what it meant to be a good man, “their responses included things like honor, duty, sacrifice, responsibility, standing up for the little guy—i.e., being a good person.” When he asked them what it meant to be a real man, “their responses shifted: being strong and stoic, never showing your feelings, playing through pain, getting rich and getting laid” (Wong 2018).
The disabled man is a constant conundrum to social consciousness because he does not make sense to the apparent natural order of things and he never will. Is he strong, tough as nails, the pure embodiment of masculinity? Or is he weak and sickly, which is the embodiment of the notion of disability? The disabled man can be one or the other but not both, never ever both, because that defies social logic! The understanding of disability, like the understanding of masculinity, needs to change, to be enlarged.
Regardless of whether we face our disability at birth or at some later point in our lives, the situation is not one of hopelessness. We can adapt. Disability is a beautiful rediscovery of life, recalibrated for a more empathic understanding of the beautiful mystery called existence. We share this not only with our human kin across generations, but also with the animals who came before us.
We can begin our journey together with a quote from one of the forefathers of the study of disability and masculinity, Harlan Hahn, who said: “I think, ironically, that men with disabilities can acquire strength by acknowledging weakness. Instead of attempting to construct a fragile and ultimately phony identity only as males, they might have more to gain, and little to lose, both individually and collectively by forging a self-concept about the concept of disability. Certainly, this approach requires the exposure of a vulnerability that has been a primary reason for the elaborate defense mechanisms that disabled men have commonly employed to protect themselves” (Gerschick and Miller 1995; Hahn 1989).
Disability should not be considered a form of weakness but rather a new form of strength, not yet charted or fully understood. Still, to get to that new understanding, we must first go through weakness. To paraphrase a common quote from a holy book, we find that “the weak will lead the strong.” Let us start with the disabled male and the vast complexities of masculinities that reside within him.
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