13. Being Human: A Critical Reflection on Personhood, Disability, and the Role of Language

Author: Kaitlin Stober, Senior

Debate over the actual rights of humans undoubtedly exists; however, a majority of social injustice comes from refusing to recognize certain groups of people as fully human, rather than refusing to recognize rights as rights. This paper will first look at the denial of human rights to minority populations, with a focus on individuals who have disabilities. Subsequently, this paper will explore what it means to be human, the significance of human recognition, and the contribution of language to the dehumanization of individuals with disabilities or of other marginalized groups.

Throughout history, human populations have been treated as subhuman, in both social and legal respects, due to race, religion, biological sex, and/or ability. Dehumanization due to race is apparent in the “Three-Fifths” compromise, passed in 1787.  This legislature defined United States slaves as 3/5 of a person for the purpose of population calculation (Historic, 1993).  The only reason slaves were regarded as having even a fraction of the worth of non-black, non-enslaved humans was because the slave owners reaped the benefits of more political power. Likewise, European invaders of Australia treated the Indigenous people as inferior beings due to their darker skin.  This perception is epitomized by the tendency of white European accounts to refer to people of Indigenous mobs as “black hides.” For instance, the 1907 Townsville Herald featured an article claiming “nothing with a black hide escaped death that night” (Reynolds, 2000). The Europeans are distinguishing themselves from the Aborigines, claiming their skin is a hide, more animal than human. Dehumanization based on religion is evident in the Holocaust during which people who practiced Judaism were labeled and treated as possessions rather than people. In regards to biological sex, the fact that females make up 98 percent of human trafficking and sexual exploitation cases suggests they are seen, by some of the world’s population, as less than human as well (EqualityNow, 2012).

The inhumane treatment of individuals with disabilities has been just as widespread, though not as commonly reflected on. Less than 50 years ago, medical experimentation was conducted on children with intellectual disabilities from the Willowbrook State School. These children were intentionally infected with hepatitis to see if gamma globulin would be affective as a cure. People with intellectual disabilities were commonly used as subjects, along with prisoners, because it was less expensive than using animal subjects like chimpanzees (Tercero-Parker, 2011). Pharmaceutical companies put a price tag on individuals with intellectual disabilities, and according to these historical accounts they were worth less than animals [1].

Shapiro (1993) cites a 1989 court case, in which a high-school female with an intellectual disability was gang-raped, to illustrate the pervasive misconception that “disabled people are somewhat less than human and therefore fair game for victimization” (Shapiro, 1993, 25). This concept is illustrated not only by the horrific actions of the perpetrators, but also by the judge. The judge ordered a relaxation of rape shield laws, which protect the privacy of rape survivors, because the female survivor had an intellectual disability. This ruling suggests, the female survivor was just as much a commodity, to be used and abused for sexual and sadistic pleasure, because the severity of her experience belittled, and she was denied the right to even own that experience. If she was a fully “abled” individual, not riddled with “imperfections,” the outcome would likely have been different.

To be human does not mean one is perfect. In fact, anthropologist Miles Richardson claims there is nothing more universal than the individual, that we are humans because of our differences (Arcaro, 2013). So if diversity is the foundation of humanity, why is it that certain types of diversity result in inferior statuses and justify the elimination of human rights?

A Pro Infirmis video campaign, Because Who is Perfect, reflects on the beauty in diversity by reconstructing mannequins based on the body measurements of individuals with physical disabilities. These remodeled mannequins were then shown in the windows of high-end department stores (Ogrodnik, 2013). Mark Zumbuhl, head of communications for Pro Infirmis, explained the project’s purpose by pointing out  “often we cling to the ideal, instead of accepting life in its diverse representations” (Ogrodnik, 2013). In addition to the positive message of Pro Infirmis, this video captured the reactions of people without physical disabilities passing the window displays. One of the models predicted that people passing by would be really irritated, and she was correct. Many passerby’s looked visibly upset, others took pictures, and some even mocked the mannequins, contorting their bodies to try and match the stance.

This reaction exemplifies the current discrimination people with disabilities face. According to a Special Olympics report (2005), individuals with intellectual disabilities face more discrimination than individuals with other forms of disabilities. Down syndrome is one such intellectual disability, as it causes cognitive delays. Down syndrome is the most common chromosomal disorder in the world, occurring once in every 691 births. Despite this frequency, there is a significant amount of stigma associated with both having Down syndrome and raising a child who has Down syndrome (NDSS, 2012).

According to Kandari and Al-Qashan (2010), the public views individuals with Down syndrome as “burdensome and shameful because they are incapable of contributing to traditional social obligations and roles”( Kandari & Al-Qashan, 2010, p. 24). Lawson and Walls-Ingram (2010) reiterate this belief reporting people assume “disability can reduce the quality of life to such an extent that nonexistence is preferable” (Lawson, 2010, p. 556). The impact of this misconception is illustrated by Hall and Marteau (2003) who report that some parents are “very angry” when they give birth to a child with Down syndrome unknowingly, so much that they plan to take legal action. The notion that an individual is filled with anger after giving birth to their own child illustrates the overbearing negativity attached to Down syndrome. The willingness to abort is much higher in the cases of Down syndrome and other mental disabilities than in serious physical impairments. Lawson and Walls-Ingram (2012) report the selective abortion rate of mothers, who learn their unborn child has Down syndrome through prenatal screening, is 92 percent. This number is expected to increase due to a recent medical “advancement” which offers a non-invasive blood test that detects Down syndrome with 98% accuracy. This test can be done earlier than the traditional amnio screening and with less health risk (Wiley, 2013).

Paul Matley’s mother, who had an amniocentesis test confirming Paul would have Down syndrome, held these stereotypes prior to the birth of her son. She explains she “thought [she] was giving birth to something alien perhaps” (Collins, 2009). The astronomical rates of selective abortion reveal the societal perception that individuals with Down syndrome offer less value to the world. In Andrew Solomon’s (2013) presentation Love No Matter What, he cites a 1968 edition of Atlantic Monthly which explicitly states the lack of value and personhood individuals with Down syndrome have. The excerpt reads:

“There is no reason to feel guilty about putting a Downs syndrome child away, whether it is put away in a hidden sanatorium or in a more responsible lethal sense. It is sad yes, but it carries no guilt. True guilt arises only from an offense against a person, and a Downs is not a person” (Solomon, 2013).

Why is an individual with Down syndrome not a person? It is because it takes them longer to learn, or because their IQ is not as high as others? Should the worth of a human being and the right to personhood be based on intellectual acuteness? These questions revolve around axiology, the study of (mostly human) values (Arcaro, 2013).  The misconception that individuals with disabilities are incapable of contributing to society, and consequently not valuable, is exasperated by their status as less than human. My personal experience, and overall willingness to appreciate people with disabilities and their work, has proven that people with disabilities are capable, and do in fact, contribute to society in a variety of ways.The lack of recognition individuals with disabilities receive can partially be attributed to the social segregation of individuals with disabilities. It is also plausible that Weber’s proposed   “iron cage of rationality” disguises any intangible contributions that cannot be measured by numbers or financial gain.

Durkheim’s sociological perspective of structural functionalism, illustrates society as a complex system of various parts. Everything that exists within society does so because it serves a purpose (Arcaro, 2013). In accordance with this perspective, the subpopulation of people with intellectual disabilities serves a purpose and contributes to the smooth functioning of society.

However, a report by Special Olympics (2005) reveals 75 percent of individuals with intellectual disabilities are unemployed. Therefore, much of their function is not directly related to the capitalistic nature of our society. The same report by Special Olympics (2005) proved that interaction with individuals with disabilities reduces misconceptions and negative stereotypes. Goffman (1986) expands on this claiming, “as persons come to be on closer terms with each other this categoric approach [of stereotyping] recedes and gradually sympathy, understanding, and a realistic assessment of personal qualities take its place” (Goffman, 1986, p. 51). Lawson and Walls-Ingram (2010) support this notion, and propose the relevance of intergroup contact theory in regards to selective abortion. This theory suggests social contact between members of different societal groups will reduce prejudice and discrimination. Therefore, if more people had interactions with individuals with Down syndrome they would be less likely to hold prejudices, discriminate against them, or have a selective abortion.  Lawson and Walls-Ingram’s (2010) findings support this, as personal familiarity was associated with more positive attitudes towards raising a child with Down syndrome and a decreased likelihood of selective abortion.

As a result, people with disabilities may contribute to the function of promoting peace and harmony within society. These contributions are difficult to quantify, and consequently fall the “steel hard cage of modern bureaucratic instrumentalism” that is our social system. (Ashley and Orenstein, 2005, 239). Weber viewed society as infected with capitalism and bureaucratization; we emphasize money and GDP over happiness and well-being. Arcaro (2013) summarized Weber’s irritation with societal structure through the paraphrased aphorism “not being able to make that which is real measurable, we have tended to make that which is measurable real.” (Arcaro, 2013). Regardless of whether or not the functional impact individuals have with society is real, it is not the most measurable. Consequently, these functions are often disregarded.This conundrum resonates with Nietzsche’s discussion on ‘is’ versus ‘ought.’ Nietzsche asserted that “just because something is a certain way doesn’t mean it ought to be that way” (Arcaro, 2013).  However, the values of ‘good’ versus ‘bad’ can only be paired up with the ‘is’ and ‘ought in a subjective manner.

Whether or not discrimination ought to exist, it certainly does. The discrimination and inhumane treatment of individuals with disabilities has sadly emerged as a social norm. According to Arcaro (2013), emergent norms come from personal interactions and the negotiation of social space with others. The interaction of individuals with and without intellectual disabilities is stunted by the institutional segregation. According to Snow (2005), “millions of children and adults with disability diagnoses are essentially ‘incarcerated’ behind the walls of ‘special (segregated) places’: special ed classrooms, congregate living quarters, day programs, sheltered work environments, and more” (2). This separation does not allow individuals with disabilities to fully impact the emerging norms; in fact, their absence from social space negotiations furthers the misconception that their presence is not valuable. A middle-school student from Japan reflects on the lack of interaction they have had with individuals of diverse abilities”

“There is nobody who has an intellectual disability around me, so I don’t know how they actually behave. In my mind they are different from me. I draw a clear line between ‘them’ and ‘us.’ I know this is wrong, but I can’t help it. I guess people who actually know about intellectual disabilities will call this misunderstanding. But as I said, I don’t have anyone with a disability around me and there is no way I can know about it. Misunderstanding is to some extent inevitable. Still I hope the Special Olympics will help us get rid of misunderstanding” (Special Olympics: Youth Attitudes, 2005, 5)

Fromm (1955) asserts that the media perpetuates such misunderstanding in the following passage:

“We are a culture of consumers. We ‘drink in’ the movies, the crime reports, the liquor, the fun. There is no active productive participation, no common unifying experience, no meaningful acting out of significant answers to life. What do we expect from our young generation?” (Fromm, 1955, 348).
The media’s depictions are not only inaccurate but harmful. According to a Special Olympic report on ‘Changing Attitudes’ (2005), the portrayal of individuals with intellectual disabilities often show the person as being “vulnerable, a victim, and/or a person worthy of pity” (Special Olympics, 2005, 1).

Pity is oppressive. Whenever someone enters a situation pitying another, there is already a power and status differential. Therefore, pity contributes to the perception of individuals with disabilities as inferior. This pity is unwarranted and unwanted. According to Shapiro (1993)  “people with disabilities are demanding rights, not medical cures” (Shapiro, 1993, 14). People with disabilities do not need people’s pity, or any magical cures; the disability rights movement is promoting self-pride, in one’s abilities and so-called “disabilities” (Shapiro, 1993).


Solomon (2012) quotes Jim Sinclair to illustrate the controversy over wishing for a cure for individuals with autism:

“This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces” (Solomon, 2012).

People with disabilities do not necessarily want to be without them. Jones, who had childhood polio, claims she would not take any medicine to make her “disability” go away, and asking if she would like to is equitable to asking a black person is they would want to change the color of their skin (Shapiro, 1993).  Shapiro (1993) recounts the statements made by abled individuals at a tribute of their friend Timothy Cook, an accomplished attorney who had polio. The highest praise these men came up with was that “He never seemed disabled to me… He was the least disabled person I ever met” (Shapiro, 1993, 3). Narcissism oozes from these comments. To think that an individual would be complimented by the fact their “disability” is not overt is astounding. This can be likened to telling a friend who practices Judaism, that they are the “least Jewish person you’ve ever met”. Why would this be a compliment? According to Shapiro (2013), Cook took pride in his “disability” because he saw it as a celebration of the diversity among people.

The recognition of all people, regardless of race, sex, religion or ability, as human beings is essential for well being at both the individual and societal level. In order to express the ties of humanity, Bolin (2013) quoted Lily Walker, an Australian Indigenous woman, as saying “If you are here to help me, then you are wasting your time.  But if you come because your liberation is bound up in mine, then let us begin.” The liberation, and recognition of a minority group as fully human, impacts our entire global network. According to Ashley and Orenstein (2005), Durkheim believed the ultimate source of human happiness was a strengthened social consciousness and collective feelings of community.  Mead supported this notion, professing our world is working towards a “unified, self-realized society” (Ashley and Orenstein, 2005, 395).

Our society must work towards social justice for all, because with this unity, we can also have true humanity. According to Fromm (1955):

“There is only one passion which satisfies man’s need to unite himself with the world, and to acquire at the same time a sense of integrity and individuality, and this is love… in the experience of love lies the only answer to being human, lies sanity” (Fromm, 1955, 31-33).

As individuals, humans have a need to unite with other humans in order to become a part of something larger than themselves. However, Fromm (1955) warns that nationalism and patriotism only impede unity, because “love for one’s country, which is not part of one’s love for humanity is not love, but idolatrous worship” (From, 1955, 59) In order to have a healthy, sane society in which individuals can grow in love and unity, hostility, distrust and exploitation must be eliminated. The actions we take now to protect human rights for all is essential. According to Mead, human action is responsible for shaping the future (Ashley and Orenstein, 2005).


In his book, No Pity: People with Disabilities Forging a New Civil Rights Movement , Shapiro (1993) asserts that language is “one of the first battlegrounds” in the fight for social justice of people with disabilities (Shapiro, 1993, 32).

Words are powerful. The prejudiced belief that people with Down syndrome are inferior is perpetuated by the colloquial use of the word “retard.” Since Down syndrome is formally recognized as mental retardation in the DSM-IV-TR, the use of the word “retard” is connected to this population. Using this term as a synonym for dumb, or stupid has “hurtful, dehumanizing and exclusive effects” (Joseph P. Kennedy Jr. Foundation, 2013). Similarly, the archaic term “handicapped,” which refers to begging with ones’ “cap in hand,” presents individuals with a disability in a negative light. (Snow, 2005).

These labels are detrimental to the self-concept of the individual. Thoits (2010) discusses the labeling theory in regards to mental illness, surmising “people who are labeled as deviant and treated as deviant, become deviant” (Thoits, 20120, 120).  People with disabilities can be, and often, labeled as deviant because their lifestyles may depart from the typical routines of people who do not have disabilities. Being labeled as “deviant” or in this “disabled,” does not just affect one’s behavior. Thoits (2010) asserts that the combination of labeling and differential treatment leads to the internalization and identification with this label. Consequently, individuals with disabilities may start to truly believe that the label of “disabled” is who they are. If we want to instigate change so individuals with disabilities get the rights they deserve, we need to start with language.

The following maxim addresses the significance of language:

“Watch your thoughts, they become words.?Watch your words, they become actions.?Watch your actions, they become habits.?Watch your habits, they become your character.?Watch your character, it becomes your destiny.” (OrthodoxNet, 2009).

This maxim, supposedly stated by Mahatma Gandhi, reinforces importance of language, as it contributes to the actions, and the potential perpetuation of social injustice.
We first must “watch” our thoughts; but is this possible? The meme theory suggests we are infected with thoughts and ideas (memes) rather than in controlling our creation or acceptance of them (Arcaro & Brown, 1999).  Arcaro and Brown (1999) present this theory on memetics as a complimentary partner to Darwinism and genetic evolution; however, while genes are passed down through family lines, memes are transmitted “in all possible directions” (Arcaro & Brown, 1999). Like viruses, we have limited control over what memes we are exposed to, or infected with.

Yet, as with viruses, certain populations of people are more susceptible. For instance, healthy, robust individuals are better prepared to fight off viruses and memes. Individuals with weak immune systems, or little educational experience, may not be able to prevent viral or memetic infections (Arcaro, 2013). Children are a particularly vulnerable subpopulation. It is possible for viruses to be systematically spread via germ warfare. It is also possible for hosts of certain memes to systematically spread them, especially to more vulnerable individuals. In fact, memes do not have to be passed on through explicit statements.  A formal lecture or statement is unnecessary to spread the idea that certain subpopulations are different, and consequently inferior; rather, consistent subtleties in word choice and order can relay this message just as effectively.

This very meme, of minority groups’ inferiority, is constantly spreading, reinforcing the belief of adults and infecting the minds of youths. In the United States, we tend to emphasize the difference of minority groups by putting these qualifying differences before them as a human beings. For instance earlier in this paper, I referenced an excerpt from a 1968 edition of Atlantic Monthly which asserted a “Down’s is not a person” (Solomon, 2012). This excerpt clearly stated that an individual with Down syndrome is less than human; however, this is evident regardless of the statement made because of the reference to a human being with Down syndrome as a “Down’s.” A person is not their disability.

Out society commonly refers to individuals in marginalized groups as a “disabled person,” a “schizophrenic,” a “poor person,” or a “black person.” In doing so, the speaker is literally creating distance between that person and themselves, that person and their personhood. The distance comes from the qualifying adjective in front of, or in replacement of, “person.” This linguistic pattern is evident in the majority of news headlines from the New York Times. When reading this news source on December 7, 2013, the following headlines were on the front page:

“Marrow Transplants Fail to Cure Two H.I.V Patients”
“South Africans Prepare For Days of Mourning and Commemoration”
“6 Arrested in Theft of Truck With Radioactive Waste”
“Cancer Survivors Celebrate Their Cancerversary”
“Poor Black and Hispanic Men at the Face of H.I.V”
“Autistic High Schooler Qualifies for Nationals” (NY Times, 2013)

Instead of H.I.V patients, what is they were referred to as people with H.I.V? Or what if the subject of all these headlines were changed? We would be left with people from South Africa, individuals who survived cancer, humans, who identify as male and black, of a lower socioeconomic status, a person with autism, and (I’m assuming) 6 human beings.

In order to achieve a better sense of unity, a more harmonious world, we need to emphasize our similarities over our differences. Around the world the human race is bound together by our personhood, we are all humans. Therefore, we should be using people first language, like “a person with a disability,” a “person who has schizophrenia,” or a “person who is in poverty.” Snow (2005) supports the use of people-first language, claiming the more common linguistic patterns contribute to the “invisible, but potent, attitudinal barrier is the greatest obstacle facing individuals with disabilities” (Snow, 2005, 2).

People with disabilities do not define themselves based on said “disability.” My brother Kyle has Down syndrome, and when I asked him to describe his identity he responded in the following manner:

“I am a runner… like you, I am an inventor, and I am very smart. I am an athlete, and a hero, like Arrow[2]” (K. Stober, personal communication, 2013).

Kyle is aware he has Down syndrome, but clearly does not see it has a large part of his identity. It is also worth noting that the first identifying characteristic Kyle listed was a connection to me, an individual without Down syndrome. In addition he did not qualify any of his characteristics because he has Down syndrome. For instance, he did not say he is very smart for someone with a cognitive disability, or that he is an athlete in the Special Olympics. He identifies in ways abled individuals would as well. Paul Matley has Down syndrome, but also does not see this as his master status. In a promotion for the documentary Dance Like Nobody’s Watching, Matley is asked if he feels proud to have Down syndrome. Paul responds, “I’m just proud to be human, just like everyone else” (Collins, 2009).

Debates surrounding human rights may focus on what people deserve or don’t deserve to practice. However, social justice will not be solved when we establish an all-inclusive list of human rights. Social justice will improve, when we succeed in recognizing all people for what they are, human beings. This will not be achieved in a single day, or solved by a single person. However, if we collectively dedicate efforts to the cause and start revolutionizing language, progress can and will happen.
 

[1] This is not to say that animals are inherently less valuable than humans (That would be quite anthropocentric). However, animals have been historically recognized as less important than humans. Therefore the use of individuals with disabilities over animals accentuates the low

[2] Arrow is a CW television series which interprets the life of DC comic super hero Green Arrow in a modern day metropolitan area


References
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