“I had a block that if I used a cane my dignity would be lost.”—quoted from an interview with a blind woman from India.
Social stigma is lethal.
Whether openly or reluctantly, most people will agree that the implicit biases and assumptions surrounding disability are incredibly powerful. Everyday, the social stigma of disability affects the thoughts and actions of non-disabled individuals.
However, that is not the lethal part.
What many non-disabled people fail to consider is how social stigma affects the actions of people with disabilities, particularly regarding their decisions to seek out medical advice or treatment.
At its root, the word disability is an act of discrimination that perpetuates stigma. As defined in the Oxford English Dictionary, the Latin prefix ‘dis’ means to be apart, separate or asunder [1]. It implies the act of removal, or loss of some quality [1].
Therefore, it should surprise nobody that disability is perceived as a negative quality among many cultures; it is a mark, physical or otherwise, that indicates inferiority to those ‘with ability’ [2]. Yet, the frequency of this slight does not make it acceptable. In fact, it is harmful and dangerous to let this assumption go uncorrected [2].
After a person experiences discrimination, and when they perceive maltreatment in the future, the stigma of disability becomes normalized [2]. By ‘accepting society’s negative evaluation and incorporating it into personal value and sense of self’, the disabled bodymind1 engages in self-stigmatization [3]. In other words, when a disabled person is treated with contempt, and generally as lesser than, they grow to expect this type of inferior treatment [2], [3].
In a study of legally-blind people who live in British Columbia, 50% of participants believed that their community would need time to know and adjust to a legally-blind person before treating them the same as a sighted person [2]. This kind of self-stigmatization is not specific to Canada [2], it occurs globally, wherever there are disabled bodyminds—and it has serious consequences for the health, socialization, and independence of disabled people.
Hard to believe?
Take into consideration the most recent initiative of the World Health Organization (WHO) in celebration of the 65th World Leprosy Day. Although, leprosy is a disease—not a disability—there are important parallels between the stigma associated with leprosy and the stigma of disability.
On Sunday, January 28, 2018—the World Health Organization called for ‘laws discriminating against people with leprosy to be abolished and replaced with policies promoting inclusion of such people within society’ [5]. WHO believed that by replacing the discriminatory laws with ones that were inclusive, they could help prevent the development of disabilities in children as a result of untreated leprosy [5].
Leprosy is a chronic, slow progressing, bacterial disease, characterized by skin lesions and thickening of the peripheral nerves [6]. Although leprosy is commonly believed to be a highly contagious disease, ‘approximately 95% of the world population has a natural immunity to leprosy’ [7].
For those who are not immune, leprosy has an incubation period that generally lasts five years, providing copious time for an infected individual to seek a diagnosis and receive the cure—a multidrug therapy which WHO has supplied free of charge for over 20 years [5], [6].
Yet, when left untreated, leprosy can be debilitating. Over time, the thickened nerves create a loss of sensation in the skin, increasing the likelihood that the infected individual will injure themself due to their inability to feel pain [6], [7]. In the advanced stages of leprosy the muscles atrophy, leading to clawing of the hands and/or toes [7].
In 2000, ‘leprosy was eliminated globally as a public health problem’ [5]. However ‘the disease persists in individuals and communities’, preliminary in Southeast Asia [5]. Each year, new cases of leprosy are diagnosed globally.
Which raises the question: if leprosy is highly curable, then why does the disease still exist?
The answer is stigma.
Today, the word leprosy conjures up the image of a person who has been disfigured and disabled by the disease, a person that should be shunned and cast out from society so they do not infect healthy people [8].
In fact, the social stigma associated with leprosy is so severe, that many infected individuals do not seek treatment until the disease has progressed to its later stages [5], [9]; many of these individuals view themselves as ‘abnormal’ and feel ashamed and/or guilty for having leprosy [9].
Believing the pervasive social stigma associated with this disease, people with leprosy may turn away from loved ones for fear of being a burden [9]. Afraid that a ‘normal’ person will find out about their disease, these affected people shy away from strangers, even medical professionals, because they fear being rejected, and ostracized as a result of this discovery [8], [9].
To be clear, leprosy is a curable disease—but by waiting to seek treatment, an individual with leprosy can become disabled; the marks left by leprosy can persist even after the individual has been cured.
After finally shedding the pain and stigma associated with leprosy, imagine being left with the stigma of disability instead…
In recent years, a group at the University of Michigan conducted a series of interviews of people with disabilities in the workplace. During an interview focused on software, one woman opened up regarding her experience of going blind in her 20s, stating: “When I lost my vision I was totally at home. I was totally caged.” She remembered “feeling miserable” like she “was out of the society” and that she “was not worth doing anything”.
Although her family was a great source of support, initially the young woman did not want to learn how to use a walking cane. She said: “I had a block that if I used a cane my dignity would be lost.” By falling prey to the stigma of disability, the woman actively did not seek out a treatment that would vastly increase her independence and quality of life.
Today she feels differently and would advise someone in a similar situation that it is better to learn how to walk with a white cane, than to constantly depend on someone else.
In another parallel to the stigma of leprosy, this woman feared being rejected and ostracized due to a condition beyond her control. When beginning a new job, she was highly concerned that her colleagues would not accept her into their social circle. Therefore, she was surprised when her new colleagues showed her affection, and made her feel like she was a part of their group.
While this is only one person’s story, this woman’s feelings, thoughts, and actions are not unique. As demonstrated in [10], it can be incredibly difficult to convince people who acquire sight loss later in life to learn how to walk with a white cane; these newly impaired individuals have a strong desire to ‘pass’ as a ‘normal’ person, in other words, to appear as if they do not have vision impairment [10]. This desire stems from the negative associations they have with blindness, and what they imagine their life would be like as a person with vision impairment [10]. As a result, these people with vision impairment are lessening their quality of life by constantly depending on a sighted person to help guide them—all because they do not want to society to think of them as sub-human.
When society judges disabled bodyminds as inferior to ‘abled’ bodyminds—we are dehumanizing people who identify as disabled. We are robbing an entire population of their dignity. It’s unacceptable. No one should have to wonder: Am I worthy of kindness? Am I worthy of respect? Am I human?
While it is impossible to take away the pain that has already been caused by stigma, it might be possible to alleviate these feelings for others going forward. However difficult the task may be, there is a clear need to destigmatize disability. Unconscious assumptions, and expectations that are negatively associated with disability will have to be rewritten.
There is a need for more, and accurate, representations of people with disabilities in mainstream culture; a crucial step forward that would reduce the burden—of providing disability education—that is currently imposed upon people with disabilities [10].
WHO was correct in thinking that there needs to be more inclusive legislation [5]. But more importantly, they were correct that discrimination needs to end [5]. Society cannot continue to turn from people with disabilities, thereby forcing them into hiding [8], [9], [10]. It’s time for disability to take center stage.
Notes
1 By referring to disabilities as either ‘of the body’ or ‘of the mind’, the segregation allows someone to to forget, or dismiss that which is not visible to the naked eye [4]. This is to say that invisible disabilities matter [4]. Additionally, in most cases for an action to occur the mental and physical work together, rather than independently of one another [4].
References
[1] Oxford University Press. (2008 Jun.) “disability, n.” [Online]. Available: http://www.oed.com/view/Entry/53381?redirectedFrom=Disability&.
[2] C. Benoit, M. Jansson, M. Jansenberger, and R. Phillips, “Disability stigmatization as a barrier to employment equity for legally-blind Canadians,” Disability & Society, vol. 28, no. 7, pp. 970–983, Oct. 2013.
[3] P. Chi, X. Li, J. Zhao, and G. Zhao, “Vicious Circle of Perceived Stigma, Enacted Stigma and Depressive Symptoms Among Children Affected by HIV/AIDS in China,” AIDS and
Behavior, vol. 18, no. 6, pp. 1054–1062, Jun. 2014.
[4] M. Price, “The Bodymind Problem and the Possibilities of Pain,” Hypatia, vol. 30, no. 1,
pp. 268–284, Feb. 2015.
[5] L. Schlein. (2018, Jan. 28). “Early Diagnosis and Treatment Can Prevent Disability from
Leprosy,” [Online] VOA News. Available:
https://www.voanews.com/a/early-diagnostic-and-treatment-can-prevent-disability-from-leprosy/4228364.html
[6] World Health Organization, South-East Asia Regional Office. (2018) “Global Leprosy
Programme” [Online]. Available: http://www.searo.who.int/entity/global_leprosy_programme/disease/en/
[7] American Leprosy Missions. (2017) “Leprosy FAQ” [Online]. Available: https://www.leprosy.org/leprosy-faqs/
[8] American Leprosy Missions. (2017) “Don’t Call Me a Leper” [Online]. Available: https://www.leprosy.org/dont-call-me-a-leper/
[9] M. Lusli et al., “Dealing with Stigma: Experiences of Persons Affected by Disabilities and Leprosy,” BioMed Research International, vol. 2015, pp. 1–9, 2015.
[10] P. Southwell, “The psycho-social challenge of adapting to visual impairment,” British Journal of Visual Impairment, vol. 30, no. 2, pp. 108–114, 2012.
Michigan ICTD 