Globe outside the United Nations. Photo by Samih Eloubeidi.
A few months ago, I was sent to the United Nations as an Official Rapporteur to the 12th Session of the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP). The theme of this year’s COSP was implementing the Convention on the Rights of Persons with Disabilities (CRPD) to ensure the inclusion of persons with disabilities (PWD) in society. While at the conference, I attended several side events that highlighted how different NGOs, companies, and organizations have made efforts to include PWD in all facets of society. Furthermore, I had the opportunity to transcribe the General Debate and Round Table Three Discussion of the General Assembly, both of which focused specifically on the inclusion of PWD in society through participation in cultural life, recreation, leisure, and sport. For this blog post, though, I want to focus on two of the side events I attended, because I believe that the personal lessons they taught me were the most valuable lessons I learned at the conference.
The first side event I attended detailed how artificial intelligence (AI) and other technology can be used to increase the inclusion, participation, and independence of PWD. Many of the panelists noted that while AI can help PWD, it can also be an obstacle that further perpetuates the societal exclusion of PWD. In response to this point, Megan Lowery, the representative for Microsoft, highlighted the importance of including PWD in the creation and dissemination of technology, noting that their input is indispensable for ensuring that the AI is in fact facilitating PWD’s inclusion and participation. As a testament to this, Alejandro Moledo from the European Disability Forum (EDF) detailed “Plug and Pray?”, a report created by the EDF to provide a perspective from PWD on emerging technologies. The report highlights the concerns and risks PWD have about these technologies and provides partial recommendations to policy makers and AI creators.
The second side event I attended focused on deinstitutionalization in the Arab region to support the inclusion and independence of PWD. As a Middle Easterner myself, I was particularly excited about this panel and the insights it would provide. Her Excellency Haifa Abu Ghazaleh and Her Excellency Ghada Wali both detailed that institutions should be made to provide health care, educational opportunities, and other resources for PWD rather than just being institutions where PWD are placed. In this way, PWD would have systems of support that would allow them to live independently while also giving them access to opportunities that could increase their inclusion in society. The discussion was opened to the panelists, all of whom were PWD; Mr. Ibrahim Abdullah, Mr. Mohammed Lotfy, and Mr. Muhannad Alazzeh. Mr. Abdullah stated that he is supportive of deinstitutionalization due to the fact that institutions isolate children with disabilities from their communities, while both Mr. Lotfy and Mr. Alazzeh supported transforming the institutions into support systems for PWD.
While these events were incredibly informative, it is not the information alone that has stuck with me. As I watched the panelists and speakers share their thoughts, the phrase, “a seat at the table”, continuously came to mind; the panelists and speakers at both side events I detailed were PWD discussing issues that PWD face. To me, this is what true representation is supposed to look like. When dealing with issues pertaining to any minority group, the people from that minority group should be responsible for leading the discourse. It is upsetting to see, then, that many people try to lead discourse when the discourse is not theirs to lead. Being well versed on the plight and issues that other minority groups face does not and should not make allies feel as though we can adequately address these issues. It is true that all minorities face struggle, but that is the extent of the commonality between us; every minority faces struggles differently, and we cannot assume that our own struggles are similar to, or even on the same level as, the struggles others face. After being at the conference, I realized that sometimes I too try to be a voice for others. However, I understand now that when it comes to discourse pertaining to other minorities, my voice is solely meant to be used to support, rather than to supplant, their voices.
From this, I also learned what it means to truly be an ally. An ally is someone who stands on the periphery of the aforementioned table, allowing the ones whose issues are being discussed to be the ones claiming the seats. However, as allies, we cannot be selective on which tables we stand on the periphery of, and this is where the conference revealed a major fault in my being an ally. I pride myself on being an adherent to intersectionality, so I was disappointed in myself when I realized that I have never included PWD within the realm of my discourse pertaining to minority rights. However, to be pro-black, pro-Muslim, pro-women, etc. is to be an advocate for the rights of PWD; these identities are not mutually exclusive. Thus, when I say that I am an adherent to intersectionality, I have a responsibility to include all minorities within this claim of adherence.
I believe that for any internal growth to occur, we need to be challenged. Without being challenged, our thought processes and views of life are static, hindering us from moving forward and evolving into better versions of ourselves. I am grateful to the IHR and Dr. Reuter for giving me the opportunity to attend the COSP, for without this experience, I do not think I would have had these faults revealed to me as clearly as they were. As I move forward, I will carry these lessons with me and continue working on bettering myself as both a person and an ally.
Movie Theater. Source: Matthew Berggren, Creative Commons
Far too often popular media, particularly horror movies, paint people with disabilities as monsters. Scary movies are notorious for taking completely real health conditions and distorting them into what appears inevitably dangerous. In some cases, they create villainous characters with physical appearances that are seen as abnormal based on real conditions that have physically visible symptoms, like acromegaly. In others, they create characters based on real mental health conditions, like dissociative identity disorder, and depict them as if they have the powers and the thirst for evil of a comic book super-villain. These dangerously inaccurate depictions of disabilities dehumanize entire groups of people in one fell swoop, often without any clear recognition from the creators of the damage they have done.
Acromegaly in Gerald’s Game
In Stephen King’s novel and film Gerald’s Game, Raymond Andrew Joubert is a graverobber, necrophiliac, and serial killer. He is also a character with acromegaly, a disorder that occurs when too much growth hormone is produced due to benign tumors (adenomas) on the pituitary gland. Acromegaly is associated with many serious health problems, such as type II diabetes, high blood pressure, an increased risk of cardiovascular disease, arthritis, and, if not treated, even death. The most visible and easily recognized symptoms of the condition are unusual growth of hands and feet, a protruding brow bone and lower jaw, an enlarged nose, and teeth that have spaced out. The condition does not make a person any more dangerous than any other. It seems that King only chose to create this character with this condition because of the physical appearance that is associated with it. This is a problem, because it perpetuates the common, preexisting belief that people who look different from what is deemed “normal” are dangerous and should be feared.
With the right lighting and camera angles, anyone could look terrifying. There is no reason to use people with real health conditions in a way that only makes life and society’s understanding of them more difficult.
Dissociative Identity Disorder
Dissociative identity disorder (DID) is one of many mental health conditions that has experienced significant harm due to failed representation in the media. It is far too common to find that fictional media depictions of DID lack any presentation of the true facts of the disorder. The Entropy System is a DID system who posts educational videos about DID on YouTube. Their series on DID in the Media does a thorough job at analyzing the quality of different examples of representation of DID in films. They use four main criteria in assessing each work.
First, does it “communicate proper diagnosis and treatment”? Many attempted depictions of DID fail to even name the disorder accurately and call it “Multiple Personality Disorder”, its name prior to 1994. These works also often suggest that all systems (the collective term for one’s alters/identities) with DID are working towards the same goal with their treatment: to integrate all the identities into one. Some systems are not interested in integrating. The Entropy System points out in many of their videos that an important part of treatment, regardless of the system’s level of interest in integration, is establishing strong communication between the different alters.
Second, does the work address the cause of DID? The disorder is a result of repetitive, severe trauma that occurs during childhood. According to the theory of Structural Dissociation, no person is born with a fully integrated personality. This means that, when we are children, we are made up of multiple individual personalities or “ego-states,” which integrate and become a single personality between the ages of six and nine. Each of these ego-states is responsible for performing a different role. DID occurs when trauma prevents these ego-states from integrating. The ego-states develop into individual identities known as alters.
Third, are the alters shown as part of a unit, or as extra bits for a central/main identity? It is important to recognize that no single alter is more real or significant that any of the others. They are all parts of the same whole.
Fourth, is the character relatable? Are all the alters well-rounded and realistic?
DID in the Media
One of the most common and most serious misconceptions that the horror genre frequently perpetuates about DID is the idea that there is such a thing as a “bad alter.” Within a DID system, each alter has a role that it performs to help protect the person with DID. One alter is responsible for day-to-day living, while another might be responsible for holding on to certain trauma memories that would make day to day living extremely difficult. One alter, called a persecutor, may mimic abusers or other people who have caused trauma to the system in an attempt to keep the system from re-experiencing the abuse. When horror movies depict a person with DID as being dangerous to others, they typically do so with a severe misrepresentation of what persecutor-alters are and what they do. The vast-majority of the time, if persecutors cause harm, it is towards the person with DID themselves and not other people. DissociaDID, another system that posts education videos about DID on YouTube, has a videothat is helpful in understanding alter roles, persecutors, and how they function within a DID system.
Films like Split and Glass are extremely harmful to the DID community, because they glamorize the idea of a “bad alter” and depict people with DID as being villains or monsters, which is far from the truth. These two movies involve a character with DID named Kevin Wendell Crumb, who has a bad alter named “The Beast” that has super-human abilities and wants to get rid of the “impure” people of the world. In Split, the other alters in the system kidnap girls and watch over them until The Beast comes out. To say that DID is depicted in an unrealistic way is quite an understatement.
For many people in the general population, their only exposure to disorders such as DID is through the media. When so much of the representation is riddled with harmful, fear-inducing inaccuracies, people who see that representation start to view people with those disorders in real life as being inherently dangerous or violent. This is whyquality and accurate representation is so important.
handicapped zone parking spot symbol on asphalt New Zealand. Source: Mr. Thinktank, Creative Commons
The Connection to Human Rights
As we continue to push for more representation in popular media for marginalized communities, we must also make sure that that representation is accurate and not harmful to those communities. When horror movies use people with disabilities in their attempts to scare their audience, they create/reinforce a belief that people with these disabilities in the real world are dangerous and scary. This is a human rights issue, because prejudice, discrimination, and violence are fueled by fear. Fear impacts who parents will let their children play with, and how children treat their classmates. This can interfere with one’s access to their right to an education, which is established in Article 26 of the Universal Declaration of Human Rights (UDHR). Fear affects how we interact with people we pass by on the street and people’s willingness to help find ways to improve people’s life experiences. This can impede one’s access to their right to be an active part of their community (Article 27) and their right to seek employment and have favorable working conditions (Article 23).
Non-disabled people need to use the privilege they have to advocate for those without it, and a person is less likely to want to advocate for someone who they are afraid of. In order to have the basic human rights of all people fulfilled, we need to all be able to look at each other as members of humanity, and fear, especially unjustified fear, inhibits that.
Conclusion
I’m not going to lie or try to pretend that I have never let these kinds of portrayals of people with disabilities change the way I look at them. Thankfully, I know better now, but there are still moments where I catch myself briefly slipping back into old ways of thinking. It is important that we as consumers of media recognize the harm that these failed representations of an already marginalized group have caused and that we do our best to avoid supporting them monetarily. We need to increase awareness of this harm, in hopes that, one day, the horror genre will no longer be made up of so many destructive stereotypes.
Rather than the same stereotypically use of people with disabilities as the antagonists in film, why not increase their representations as protagonists? Imagine, a horror movie where the protagonist is a person with DID, whose alters all work together to survive while also dealing with the memory loss that often comes with the switching of identities. The film A Quiet Place is a brilliant example of positive and constructive disability representation. One of the main characters is a young deaf girl, and her disability ends up saving her family. In a world where making noise is a deadly act, their knowledge of sign language allowed them to communicate without risking their lives. This is in complete opposition of the stereotypical idea that people with disabilities are burdensome for their loved one. The makers of the film clearly did their research and were able to help spark important conversations about disability representation.
Warning: This blog includes content on violent acts against people with disabilities.
Last week, James Quilter was nearly strangled to death last week by his own mother. Quilter, 21, is a nonverbal autistic man with Langer-Giedion Syndrome. His mother became enraged after seeing a mess created by her son. Screaming for him to die, Gidget Quilter pushed James to the ground and choked him in front of her other six children.
Stories like this are not uncommon. Children with disabilities suffer from physical abuse at a rate over four times higher than children without disabilities (WHO). Parents of children with disabilities may lack a nuanced, informed understanding of disability. Lack of knowledge in itself shouldn’t be demonized, but ableist misinformation has dangerous and even fatal results. Abled parents may think of their child’s disability in terms of their own experience, creating selfish motivations with detrimental results. This perspective has led to disability advocacy organizations that are operated by and designed around abled caregivers and parents. In these spaces, the conversation is warped to emphasize “fixing” and eradicating disability instead of empowerment. This perpetuates dangerous stereotypes and justifies people like Gidget Quilter.
“not a puzzle.” Source: Philosophography, Creative Commons.
As I have discussed in earlier posts likeDisability History: Overlooked but Not Forgotten, ableism is a phenomenon based on implicit negative bias towards disability that is played out on every level of society. Ableism is rooted in widespread bodily expectations of “perfect” ability. All actors within ableist systems have the burden of meeting sociocultural bodily expectations. On an abstract level, anyone not meeting ability expectations is expected to accept the risks that come with perceived weakness/vulnerability; anyone who meets the standard for ability expects immunity for enforcing ability expectations, even if violent. In a society that rewards and idealizes normality, hatred is often directed at anyone showing otherness or “abnormality.” Audre Lorde discusses this frankly in her classic collection, “Sister Outsider.”
“Institutionalized rejection of difference is an absolute necessity in a profit economy which needs outsiders as surplus people. As members of such an economy, we have all been programmed to respond to the human differences between us with fear and loathing and to handle that difference in one of three ways: ignore it, and if that is not possible, copy it if we think it is dominant, or destroy it if we think it is subordinate” (Lorde, 1984:77).
In blogs like the one mentioned above, I chose to leave out details on the suffering of people with disabilities. This was intentional, as I wrote, “It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes.” I stand by this sentiment, especially in the context of empowering historical narratives, but it feels critical to bring attention to violent ableism in its own piece.
Violence is a mechanism by which individuals assert ableism, but not all cases of ableist violence are as visible as the attack against James Quilter. Violence, according to Galtung, is enacted when “human beings are effectively prevented from realizing their potentialities,” (1969:170) or when there is an ability to avoid harm that is neglected in favor of others’ benefit. This encompasses deprivation of health through personal violence (direct violence) and social injustice (structural violence). Personal or direct violence is further understood as having both physical and psychological components. In the following subsections, I will identify psychological/internal violent ableism, physical/direct violent ableism, and the structural violence of ableism. All of these elements compound into a fundamentally ableist world in which people with disabilities face endless barriers to empowerment and liberation.
Disability has long been viewed as a deficit in ability, with blame for impairment placed upon the disabled individual. This framework instills a deep sense of inadequacy and shame for people with disabilities, amplifying when the disabled individual relies on the assistance of others or social welfare programs. Internally, shame is generated by the weight of burdening others in societies that assign value to self-sufficiency. Shame reinforces a lack of self-esteem that further impedes participation in society. This process has been disrupted with personal empowerment made possible with the social model of disability. Per Tom Shakespeare, “The problem of disability is relocated from the individual, to the barriers and attitudes which disable her. It is not the disabled person who is to blame, but society. She does not have to change, society does. Rather than feeling self-pity, she can feel anger and pride,” (Shakespeare, 2006:200). Read more IHR blog posts about the social model of disabilityhere andhere.
This has been revolutionary for the empowerment of disabled people, but society at large has not yet embraced this perspective. Ableist bias runs deep and is clearly manifested in the discrimination and exclusion of people with disabilities in society.
Direct Violence
In part due to these fears and biases, persons with disabilities overwhelmingly experience disproportionately high rates of direct violence. Davis writes, “People with disabilities have been isolated, incarcerated, observed, written about, operated on, instructed, implanted, regulated, treated, institutionalized, and controlled to a degree probably unequal to that experienced by any other minority group” (2006: xvi). Per the National Crime Victimization Survey conducted by the U.S. Bureau of Justice Statistics, “the rate of violent victimization for persons with disabilities was at least 2.5 times the rate for those without disabilities.” Disabled women face violent victimization at a rate of 32.8 per 1,000, compared to abled women at 11.4 per 1,000 (Harell, 2017).
The disaggregated nature of the disabled community translates into a preponderance of data for specific impairments. For example, people with cognitive/developmental disabilities are up to ten times more likely to be victims of crime, and often face repeat victimization (Petersilia, 2000). Per the same source, sexual assault rates for women with developmental disabilities are over fifty percent higher than in the general population. This is partially due to the physical vulnerability of people with disabilities but can also be tied to broad assumptions that dehumanize disabled people as well as structural factors that increase vulnerability. A study published in the Journal of Interpersonal Violence found that “structural violence was shown to underpin all other forms of interpersonal violence,” which, they further conclude, increases the vulnerability of persons with disabilities in addition to isolating them from society (Neille and Penn, 2015).
“The Wheelchair Wanderer.” Source: Edward Allen Lim, Creative Commons.
Structural Violence
Structural violence is more difficult to identify and prohibit than direct physical violence, and its impacts are much deeper. Injustice is built into the structure of our world, which “shows up as unequal power and consequently as unequal life chances” (Galtung, 171). Centuries of global ableist conduct explains why the structural violence of ableism is so deeply wrought, and why it is such a challenge to identify the full extent of its power. I will attempt to explain the roots of ableism, violence as an enforcing mechanism, and the current manifestations of this structure.
Disability cannot be an “other” unless conceptions of the body are expected to fit some standard or ideal physical form. In other words, deviance can hardly be defined outside of its distance from an ideal. Though modern culture is normalized to judge anything by its “average” or “normal” form, these concepts are relatively new. The field of statistics gained steam in the early 19th century, heralded by a group of European eugenicists looking for a way to improve humanity – first by establishing an ideal for mankind, and then acting to eliminate wrongful deviations. “Eugenics became obsessed with the elimination of ‘defectives,’ a category which included the ‘feeble-minded,’ the deaf, the blind, the physically defective, and so on” (Davis, 2006). The hierarchical conceptualization of the body was used to uphold classist structures and elite institutions of power.
These ideas, aided by the popularity of social Darwinism, became prevalent and were applied into political, social, and legal institutions – effectively cementing structural ableism.
Impacts of Structural Ableism
Reproductive violence is a significant type of violence enacted against disabled people on a structural level. Forced sterilization is a major component of this. People with disabilities have historically been forced to undergo sterilization in a variety of countries and time periods, including 20th century America. By 1931, nearly thirty states had compulsory-sterilization laws, aimed at “the insane, ‘feeble-minded,’ sexual perverts, drug fiends, drunkards, epileptics, and ‘other diseased and degenerate persons,’” (Hubbard, 2010:95). The fact that so many states implemented compulsory-sterilization laws is a testament to the pervasiveness of ableism.This foundation was laid in the 19th century but, like many other forms of systematic oppression, is continuously self-reinforcing.
“In the case of disability, [oppression is reinforced] by a circuitry of power and ideology that constantly amplifies the normality of domination and compresses difference into classification norms… of superiority and normality against inferiority and abnormality.” (Charlton, 2006:225).
Unchecked ableism has created a world in which people with disabilities face endless barriers to empowerment and liberation. One major mechanism of ableist structural violence is economic injustice; this, perhaps, has been the most recognizable form of indirect violence for disabled people. Poverty is both a cause and a consequence of disability, forming the disability-poverty circle. Over 27% of individuals with disabilities live in poverty in the United States – nearly double the 12.5% rate for the general population (Wohl, 2014:3). Discrimination in employment, inaccessible urban environments, and lack of accessible transportation make it incredibly difficult for people with disabilities to generate an adequate or stable income. Lack of insurance with overpriced medical bills often exhaust disabled peoples’ resources, while restrictive qualifications for government assistance complicates life further.
“Getting fitted out for a better future.” Source: Kanishka Afshari/FCO/DFID, Creative Commons.
Globally, disabled people, particularly in periphery countries, are “the poorest and most powerless people on earth,” (Charlton, 2006:218), facing a compendium of internal, interpersonal, and structural violence. Political economy is a critical area to investigate here, being the system that informs the hierarchy of wealth/poverty, production/exchange, power and privilege. The political economy has evolved to be ruled by “laws of capital and profit,” (Charlton 2006:218) with no room for deviation, impairment, or mercy.
Conclusion
Persons with disabilities face violence at the psychological/internal level through shame and stigma; at the interpersonal level through direct/physical violence between individuals; and at the structural level through norms that “otherize” deviance, discriminatory policy, and institutions like the international political economy. Violent ableism is an intentional mechanism to reinforce elitist structures of power that benefit “superior” groups and eradicate “inferior” deviants. Ableism is a self-perpetuating cycle that operates through internal assumptions, individual interactions, and structural manifestations in policies and institutions.
Structural ableism will stay rooted in place until positive peace for the disability community is actively pursued at every level – challenging internal bias, practicing social compassion, and preventing future manifestations of ableist structural violence through the destruction of that system and the active, inclusive construction of a better one. Stay tuned to the IHR’s Facebook and Twitter for my next blog on what positive peace for the disability community looks like, and how we can achieve it.
Works Cited
Charlton, James I. “The Dimensions of Disability Oppression: An Overview.” In Lennard J. Davis, Disability Studies Reader, 2nd ed, 2006, pp. 217-230.
Davis, Lennard J. “Constructing Normalcy.” Disability Studies Reader, 2nd ed, 2006, pp. 3-16.
Davis, Lennard J. “Disability Studies Reader,” 2nd ed, 2006. Routledge, Taylor & Francis Group. New York, NY,
Finkelstein, Vic. “To Deny or Not to Deny Disability.” In Handicap in a Social World, edited by A Brehin et al. Sevenoaks: OUP/Hodder and Stoughton. 1981.
Galtung, Johan. “Violence, Peace, and Peace Research.” Journal of Peace Research, vol. 6, no. 3, 1969, pp. 167–191. JSTOR, JSTOR, www.jstor.org/stable/422690.
Harell, Erika. “Crime Against Persons with Disabilities: 2009 – 2015 Statistics.” National Crime Victimization Survey, Bureau of Justice Statistics, 11 June 2017.
Lorde, Audre. “Sister Outsider – Essays and Speeches.” The Crossing Press, 1984.
Shakespeare, Tom (2006). The Social Model of Disability. In Lennard J. Davis (ed.), The Disability Studies Reader, 2nd ed., 2006, pp. 197-204.
Patterson, Cynthia. “‘Not Worth the Rearing’: The Causes of Infant Exposure in Ancient Greece.” Transactions of the American Philological Association (1974-), vol. 115, 1985, pp. 103–123. JSTOR, JSTOR, www.jstor.org/stable/284192.
Wohl, Alexander. “Poverty, Employment, And Disability: The Next Great Civil Rights Battle.” Human Rights, vol. 40, no. 3, 2014, pp. 18–22. JSTOR, JSTOR, www.jstor.org/stable/26408468.
The ability to be rewarded for making meaningful contributions to society and to choose our own private residence are two facets of life many of us often take for granted. However, many individuals with a form of disability often encounter barriers during their journey locating work and housing. These barriers can arise from social isolation, discriminatory and / or inadequate governmental policies, economic hardship, or simply a lack of awareness of resources designed to aid persons with disabilities to find employment and housing. These material and immaterial barriers fall under the broad umbrella ofableism, defined here as “the intentional or unintentional discrimination or oppression of individuals with disabilities”. The following post explores four case studies surrounding the themes of housing and employment and how various cultures have either failed to address these needs or offered innovative solutions to persons with disabilities. Finally, for the purpose of this blog,disability is defined, in accordance with the Washington Group (2018), as “problems, such as impairment, activity limitation or participation restrictions that include the negative aspects of functioning” in the following six domains: (a) walking; (b) seeing; (c) hearing; (d) cognition; (e) self-care; and (f) communication. This blog post offers an anthropologically-informed context for to upcoming panel ‘Disability Rights, Employment, and Housing in a Cross-Cultural Perspective’at the Institute for Human Right’s Symposium on Disability Rights.
Disability Rights & Employment: South Africa
South Africa’s government of apartheid came to power in 1948 and institutionalized a cultural and political zeitgeist of xenophobia, discrimination, and violence towards the Other. Throughout apartheid’s hold on South Africa, systems of cultural and structural violence were erected both within social life and in bureaucratic policy. Apartheid is most infamous for its impact on racially-motivated violence; however, other forms of discrimination were enabled by apartheid policy and philosophy as well. Engelbrecht (2006) notes that education systems institutionalized apartheid policies in curricula development and inclusivity within schools. This specifically barred children with disabilities from actively participating in the education system, from primary through tertiary levels. Englebrecht (2006) contends children with disabilities were actively excluded from South African governmentally-controlled education systems. This means children with disabilities during the apartheid regime did not receive adequate preparation for entering into the workforce, thus placing these individuals at a low ‘tract’ and preventing them from seeking or acquiring meaningful employment. Englebrecht (2006) emphasizes that discriminatory and / or prejudicial national policies focused on one marginalized population (e.g. apartheid) often seep into the experiences of other marginalized populations as well. In short, government-sanctioned racist policies immobilized the disability community. To repress one group is to repress all groups.
The South African Human Rights Commission (SAHRC) was inaugurated in October of 1995, as mandated by the South African Constitution’s Human Rights Commission of 1994. The SAHRC is charged with monitoring, preventing violations of, and educating the public about human rights within the South African context. A specific function of the SAHRC is to examine how apartheid-era policies impacted South African civil society and how to eliminate the vestiges of structural violence still propagated by the former apartheid regime. The SAHRC provides further evidence supporting Engelbrecht’s (2006) theory that the repression of children with disabilities would negatively impact South African workforce. The SAHRC (2017) summarizes trends of disability employment, demonstrating that workforce equity (equally considering and making efforts to hire marginalized populations, such as the disability community) is nowhere near the South African Department of Labor’s goal of 7% by the year 2030. In 2017, workplace equity was still under 2%, with 8 in 10 persons with disabilities unable to find employment (SAHRC, 2017). A variety of reasons are given for this abysmally low number, including: lack of reasonable accommodation, inequality and discrimination, and a persistent inability to obtain a quality education. The ghost of apartheid, it seems, haunts the disability community within South Africa, preventing a vast majority of persons with disabilities from obtaining education, training, and gainful employment.
“Dublin – The Big Snow of 2010 – Along the Liffey” by William Murphy, Creative Commons
Disability Rights & Employment: Ireland
In 2017, the British Conservative government announced plans to cut the Employment and Support Allowance for persons with disabilities who were deemed ‘capable of preparing to return to work’ by 30£ / week (~$40 / week). The British government implemented this policy as a ‘motivational tool’ for persons with disabilities and as an austerity measure, despite the fact that previous disability allowances (akin to welfare or social security measures in the United States) left 1/3 of allowance recipients struggling to afford food. However, the ministers of Ireland, taking cue from their outraged constituents, have chosen a different path to empower persons with disabilities to find employment. Instead of the ‘pull yourself up by the bootstraps’ strategy of British Conservative MPs, Irish Minister for Social Protection Regina Doherty and Minister of State for People with Disabilities Finian McGrath have chosen to listen to persons with disabilities themselves to assess the best way to promote gainful employment within the disability community. In response to a 2017 policy brief Make Work Pay, Doherty, McGrath, and other policy-makers are distributing questionnaires to adults with disabilities and parents of young children with disabilities to assess the employment needs of the disability community (Clougherty, 2017). This approach to governance, one defined by inclusivity and direct participation of the disability community, shows promise in exploring the complicated relationship between disability and employment.
Of particular importance in the employment-disability nexus is accounting for an individual’s preference for work and her or his form of disability. The Irish ministers understand that low-functioning persons with disabilities will, for the entirety of their life, be simply unable to work. These individuals require assistance from the government thereby ensuring these persons are included in society and are able to participate in decisions regarding their lives and livelihoods. On the other hand, some individuals are temporarily disabled and do not require the same social security from governments. By asking for input from persons with disabilities themselves, the Irish policy-makers are better equipped to make educated, inclusive, and effective policies and programs aimed at insuring equitable and equal employment within the disability community.
“Al-Saraya al-Hamra Fortress, Tripoli” by David Stanley, Creative Commons
Disability Rights & Housing: Libya
The State of Libya, located at the Northern-most tip of Africa and bordered by the Mediterranean Sea, is in the midst of rebuilding civil society following the catastrophic Libyan Civil War of 2011. For over forty years, Muammar Gaddafi ruled over Libya, attempting to introduce a socialist regime and command economy to the Libyan State. During his reign, Gaddafi allegedly sought to implement a political philosophy of jamahiriya(جماهيرية), meaning “state of the masses” in Arabic – akin to ‘direct democracy’. Through this system, Gaddafi created the national General People’s Congress, whose directives (including any form of a Libyan Constitution) could be superseded by the Basic People’s Congress, municipally-led executive and legislative bodies. Hypothetically, this system placed most political power at the local level; however, Gaddafi’s actual dictatorial rule inverted the political equation. In the past half century, this political system (again, on paper) aimed to enshrine the rights of persons with disabilities through the passage of the 1981 “Law on Disabled People”, arranging for “government provision of housing, home care, education, prosthetic limbs and rehabilitation for people with disability in Libya” (Hamed el-Sahly & Cusick, 2016, p. 12). In political practice, Libyan persons with disabilities suffered major human rights violations, including lack of housing and home care, due to insufficient mechanisms of care and cultural taboos.
Although political and economic recovery may well be on the horizon for post-conflict Libya, cultural barriers prevent many Libyans with disabilities from securing independent and safe housing. In a comparative study, many Libyans express unfavorable attitudes towards persons with disabilities along three dimensions: (1) lower ratings of willingness to empower the disability community; (2) higher ratings of exclusion; and (3) lower ratings of similarity between disabled and non-disabled people (Benomir, Nicholson & Beail, 2016). Most pertinent to issues related to housing, Libyan participants scored high on the ‘need to shelter’ persons with disabilities – meaning intentionally secluding these individuals from broader society for fear of communal judgement and the social stigma attached to disability. Furthermore, efforts to facilitate the transition from being ‘sheltered’ (living with a family member) to an autonomous home life is seen as a problem ‘for and by’ the disability community – i.e., it is the responsibility of the disability community alone to solve social issues related to their situation in life (Cusick & Hamed el-Sahly, 2018). This demonstrates that governmental policies intending to enshrine disability rights are insufficient – societies themselves must be willing to tackle these issues head on.
“Grand Canyon Hopi House 0073” by Grand Canyon National Park, Creative Commons
Disability Rights & Housing: Native Americans
Persons with disabilities with another form of marginalized identity (e.g. members of an indigenous group) are placed at a heightened risk for social isolation / exclusion, for physical and mental health concerns, and having disability-related needs go unmet (US Department of Health & Human Services, 2017). Within American Indian / Alaska Native (AIAN) communities, this translates specifically into housing issues, as AIAN reservations already suffer from a lack of resources and infrastructural investment to provide for non-disabled AIAN individuals (US Department of Health & Human Services, 2017). An estimated 21 – 69% of homes on reservations are overcrowded and have serious physical deficiencies compared with 5.9% of non-reservation US homes nationally (US National Council on Disability, 2003). To address these intersecting concerns, the AIAN community, in tandem with the US government, have prepared and started implementing policy prescriptions to provide affordable, safe, and dignified housing to AIAN with disabilities.
Of primary concern in planning homes for persons with disabilities is utilizing principles of universal design – “guidelines for housing construction that would create a livable, marketable environment for everyone regardless of ability, age, or size” (US National Council on Disability, 2003, p. 94). Currently, the American Indian Disability Technical Assistance Center provides assessments of universal design within reservations and makes design prescriptions if the home in question is not fully accessible. Implementation of these prescriptions may fall to the American Indian Disability Legislation Project (AIDLP), a culturally-informed taskforce mandated to draft and pass legislation standardizing disability-related care (including autonomous and accessible housing) on Indian reservations (US Department of Health & Human Services, 2017). The AIDLP, in addition to ensuring reservations adhere to the Americans with Disabilities Act, acts as a cultural liaison between the disability community and AIAN community to ensure disability concerns are handled in a culturally-appropriate manner. Finally, the AIDLP and other AIAN-affiliated, disability-related advocacy groups ground their research and implementation efforts by tackling both material (e.g. physical accessibility) and immaterial (e.g. cultural stigma) barriers (US Department of Health & Human Services, 2017).
Towards a Global Culture of Disability Empowerment
The preceding case studies illustrate that disability rights, especially related to employment and housing, are high complicated issues. Historical events, such as apartheid and civil war, interact with governmental policies, such as austerity measures and indigenous sovereignty. Underlying each of these examples is the ‘culture’ surrounding disability – how peoples across the world value or stigmatize the experiences and perspectives of the disability community. In some cases, such as South Africa, systems of discrimination have erected structural barriers holding back people with disabilities, even though disability-related stigma may have lost its potency. In other cases, such as American Indian / Alaska Native communities, an additional marginalized identity may facilitate an even greater emphasis on seeking justice and equity for persons with disabilities. As local, national, and global disability movements aim to eliminate social exclusion and promote equality in life and livelihood, the myriad cultures of disability must be unpacked and explained. This post argues that moving towards a global cultural of disability empowerment is indeed possible. Once this culture of empowerment has been adopted, disability-related concerns, such as employment and housing, will be addressed and rectified across the globe.
Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram. And don’t forget to tag your Symposium-related posts with our event hashtag: #DisabilityRightsBHM
References
Benomis, A. M., Nicolson, R. I. & Beail, N. (2016). Attitudes towards people with intellectual disability in the UK and Libya: A cross-cultural comparison. Research in Developmental Disabilities, 2016, 1-9.
Clougherty, T. (2017). Make Work Pay: A New Agenda for Fairer Taxes. Cork, Ireland: Center for Policy Studies.
Cusick, A. & Hamed el-Sahly, R. M. (2018). People with disability are a medicalized minority: Findings of a scoping review. Scandinavian Journal of Disability Research, 20(1), 182-196.
Engelbrecht, P. (2006). The implementation of inclusive education in South Africa after ten years of democracy. European Journal of Psychology of Education, 21(3), 253-264.
Hamed el-Sahly, R. M. & Cusick, A. (2016). Rehabilitation services in Benghazi, Libya: An organizational case study. Middle East Journal of Family Medicine, 14(9), 11-18.
South African Human Rights Commission (2017). Research Brief of Disability and Equality in South Africa. Braamfontein, South Africa: South African Human Rights Commission.
US Department of Health & Human Services (2017). Emerging LTSS Issues in Indian Country: Disability and Housing. Spokane, WA: Kauffman & Associates, Incorporated.
US National Council on Disability (2003). Understanding Disabilities in American Indian & Alaska Native Communities. Washington, DC: National Council on Disability.
*Author’s note: I am aware of discourse on person-first language (people with disabilities) versus identity-first language (disabled people). I identify as disabled (chronic illness is a form of disability) and personally prefer identity-first over person-first, but I will use both forms in this blog as to avoid repetition.
“Classroom scene with teacher Kate Hobart showing students how to use mirrors to assist speech-learning.” 1893, Horace Mann School for the Deaf. Source: Boston City Archives, Creative Commons.
The history of disability is asymmetrical. We know that history is always written by those with the power to wield the pen, and the powerful have always trodden on disabled people*. This is why history has most commonly staged people with disabilities as passive subjects — voiceless patients, preserved in history as miserable recipients of medical treatments, cures, and operations. Before the acknowledgement of dis/ability as a socially constructed identity much like gender or race, the dominant framework was the medical model. Impairments were seen from a medical standpoint as afflictions to remove, and “disability history” is full of famed doctors who found apparent solutions to bodily deviance. [Read more about the difference in the medical and social models in this post by graduate student and IHR intern Shane Burns!]
Disability scholars, in the past few decades, have begun to reclaim disabled narratives and frame them in ways that empower and enrich the social matrix of ability.
Like African American revisionists, we strive to reevaluate history with an additional, more critical lens. Before critical race scholars/theorists reasserted historic perspectives to reveal deep-seated racism (alongside the influential Civil Rights and Black Power movements), American society accepted racial discrimination as a fact of life. Ableism can be subverted in a similar way. Modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis. Additionally, revisionism – in disability history, Black history, LGBTQ history, etc. – grants the option to see historically oppressed groups as agents of change rather than sufferers of fate. Obviously, the lingering trauma experienced by oppressed identities cannot be ignored, and it would be detrimental to assume that the same forces of oppression no longer exist. But viewing disabled people as individuals with power, richness, and complexity is an empowering perspective.
“Stella Young with Ann Cody.” Source: Exchanges Photos, Creative Commons. [Watch Stella Young’s phenomenal TED talk, “I’m not your inspiration, thank you very much,” here.]In that spirit, this blog will give a brief overview of the disability rights movement, and will highlight some overlooked historical perspectives of persons with disabilities. I will condense the obligatory section detailing the terrible harms suffered by people with disabilities over the centuries : subjugation, abuse, isolation, eugenic extermination, etc. Disabled people have suffered in a wide range of circumstances and continue to suffer today from a toxic mixture of economic, social, political, and cultural barriers. It’s exhausting and demoralizing to read about these things as a disabled person. It also encourages unneeded pity from non-disabled people. Though pity may come from good intentions, it only reinforces dehumanizing attitudes. These attitudes replicate through supposedly innocent interactions like “oh, you poor thing,” and “if I were you, I’d just want to die! I can’t believe you do it!” These sentiments are fairly common reactions from non-disabled people, and they are often said with emphatic sympathy. Yet these are the same attitudes that have stolen agency from disabled people, used their life struggles as perverted inspiration, and used as an excuse to suppress, subject, torture, and extinguish people with disabilities.
Ableism, like many other “isms,” is bound and sustained through micro-level interactions rooted in unconscious yet detrimental assumptions. If you are a non-disabled person, I urge you to reflect before you react to disabled narratives, and consider how your assumptions have been informed by bias. Be sure to actively listen with compassion, react with empathy instead of pity, and always practice validation. It’s okay to have questions, and it’s okay to feel uncomfortable. Sit with your discomfort. Explore it. Decide to challenge it, and you may find yourself with a new perspective.
“Disabled people protest outside St Mary’s House, Norwich.” Source: Roger Blackwell, Creative Commons.
The Disability Rights Movement
“People with disabilities have been socially dispersed and have lacked both a common identity and the economic and political resources to coalesce into an active and effective movement capable of political action. A rights-oriented consciousness and an adequate organizational apparatus have both been essential to creating the disability rights movement.” – Scotch (1989, p. 4).
In other words, the disability rights movement required a) the collective understanding that disabled people as a group deserved rights and b) the resources to organize and motivate that group effectively.
This effort began to gather momentum in the 1960s, inspired by the grassroots activism of the time (another significant nod to the Civil Rights & Black Power movements). The early disability rights movement also benefited from community programs for disabled people, such as disabled student programs on college campuses. These programs were meant to provide services for people with disabilities, but they also inadvertently connected disabled people.
This was a radical change in society. Most disabled people were physically and socially isolated from one another prior to this movement — individuals with diverse impairments didn’t recognize each other under a “disabled” identity. This disconnect is caused by compounding issues. For instance, an epileptic person has a different set of struggles than a Deaf person or a wheelchair user. In other words, different impairments look and function differently, and it can be hard to conceptualize shared identity between such diverse experiences. Community spaces are often inaccessible, while home environments are isolating. In these situations (especially when surrounded by non-disabled caretakers/family) personal autonomy and dignity can be limited. Without opportunities to share narratives among peers, disabled people had no way of knowing the vast network who shared their experiences. But when this network began to develop, it became apparent that many of us feel the same pain. Together, we could investigate our experiences and find that they’re all rooted in the same institutional structures, harmful biases, and violent enforcement of so-called normalcy.
The first major assertion of collective disabled power came in the early 1970’s. Union of Physically Impaired Against Segregation (UPIAS) was a British group whose radical publications – including Fundamental Principles of Disability (1975) — formed the ideological foundations from which the social model of disability emerged in the early eighties. Penned by Mike Oliver, the social model pointed out that having a disability is not an impairment in itself, but that impairments are created by an inaccessible society. The impairment of poor vision would be disabling if glasses weren’t widely accessible. This shifted the entire paradigm of ability. Everyone experiences limitation and impairment, ability exists on a spectrum, and the social mechanisms that separate “abled” from “disabled” can be torn down. The suffering experienced by disabled people isn’t inherent and should not be accepted. Disabled people can celebrate their own existence, and can demand a better existence for themselves and their peers. Judy Heumann says it much better than I can:
“As long as you believe that your life is a tragedy, you can’t do very many good things with your life. Once you believe that the tragedy isn’t your fault, that it is the failure of the political system to acknowledge your rights as a human being, to be equal in society, that you can as an individual have a voice as part of a group, then you can make a difference.”
Disabled Perspectives in History
Historical records lack the perspective of most disabled people themselves, save for a notable few whose privilege awarded access to education and personal acclaim. Helen Keller was certainly not the first person to be born both Deaf and blind, but her family’s relative privilege granted Ms. Keller access to education and the social positioning to benefit from it. Helen Keller is an inspirational, barrier-breaking figure. That’s not up for debate. But it is noteworthy to mention that her privilege – having a well-connected white family with roots in Southern aristocracy – facilitated her success. Helen learned a variety of communication methods, including ASL, Braille, touch lip-reading, and speaking verbally. She attended college – a notable feat for any woman in her era – and went on to publish a dozen books, helped found several organizations (ACLU, American Foundation for the Blind, Helen Keller International), and even won an Oscar (Helen Keller International).
“Helen Keller taking a speech lesson from Annie Sullivan.” 1890-1895, Horace Mann School for the Deaf records. Source: City of Boston Archives, Collection 0420.047, Creative Commons.
Frida Kahlo is a famous Mexican artist and painter whose disabilities greatly impacted her work. The story of Kahlo’s trolley accident at age 18 is infamous, as well as the physical impact – a broken spine, broken pelvis, and a severe abdominal injury. Prior to this accident, she contracted polio at age 6, and is believed to have been born with spina bifida (Daunton). These experiences are well-known; Kahlo’s legacy has been tainted by pity and morbid fascination with her painful experiences. I believe she should be celebrated in a light that honors her experience. Not only was Kahlo a fierce, vibrant spirit with immense artistic talent, but she broke barriers for other disabled women of color. Kahlo embraced the unique, rich perspective that she had gained through dealing with years of pain, vulnerability, and isolation – channeling it into powerful art. Frida Kahlo unapologetically existed as a disabled woman of color, presenting her body in all its beautiful, sexual, and painful complexities.
“Frida Kahlo – Two Fridas (1939).” Source: Cea, Creative Commons.
Harriet Tubman is another extraordinary woman of color who was affected by disability. Tubman experienced a traumatic brain injury at age 12 at the hands of a slave owner. Tubman dealt with complications for the rest of her life including severe pain, seizures and/or narcoleptic episodes. Her disabilities may have contributed to her success, as Tubman’s narcoleptic trance-like episodes offered moments of great spiritual impact (Sabourin et al, 2016). A deeply religious woman, Harriet Tubman was guided by her faith to rescue hundreds of slaves over the course of thirteen incredibly dangerous escape missions. Tubman also is the first woman to plan and lead a military operation against the Confederacy – with stealth skills and knowledge of Southern geography, “General Tubman” conducted a successful raid on Combahee River that freed over 700 slaves (National Museum of African American History & Culture).
“Harriet Tubman (far left) with family and neighbors, circa 1887.” Source: Bettman/Corbis, Creative Commons.
Conclusion
The history of disability – as a movement, as individuals, as an identity – is rich, compelling, and intersectional. We should see it as an under-explored reserve of knowledge hidden by suppression, and a perspective to be treasured. Disability history demands to be re-examined and reclaimed in a framework of empowerment. It’s critical for incorporating disability rights into wider society. When you apply modern standards to historical events and figures, a narrative of agency and power can emerge. Simultaneously, it can reveal the despicable mechanisms that create, inform, and enforce oppression. As I said earlier — modern principles of universal justice and equity equip us to destroy structural injustice wherever it lurks within the depths of unchallenged social praxis.
Many of those who engage with social networking platforms have heard of social media subcultures such as Asian-American Twitter, Black Twitter, and Feminist Twitter. These digital subcultures often address sociocultural issues related to their communities and galvanize captivating hashtags, like #BeingAsian, #BlackLivesMatter, and #MeToo, that take the mainstream media by storm. Among, and often intersecting with, these social causes is a growing phenomenon that could be referred to as Disability Twitter. Here, disabled activists share individual narratives coupled with hashtags, such as #AbledsAreExhausting, #DisabledAndCute, and #ThisIsAbleism, as well as address cultural, social, and political issues affecting the disability community through sentiments like #CripTheVote (accessible voting), #DisabilityTooWhite (limited representation of people of color with disabilities), and #SuckItAbleism (plastic straw ban). Such efforts have also been extended to social media platforms such as Facebook and Instagram, further capturing the attention of disability rights to internet users worldwide, generating dialogue and solutions that relate to accessibility.
smartphone. Source: pixabay.com, Creative Commons
With two-thirds of the globe connected by a mobile device, usage of phone apps has become the norm for many people. While many people use such apps for daily tasks and leisure, others utilize these platforms to amplify justice-related causes, namely access for people with disabilities. For example, Wheelmap is a service that allows users to locate and mark accessible places in seven languages. One does so by rating a respective space with a traffic light system that indicates green markings are wheelchair accessible, yellow markings have restricted wheelchair access, and red markings are not wheelchair accessible. Voice of Specially Abled People (VOSAP) is an India-based organization who created a phone app with the same name which crowdsources accessibility data so it can be used to inform community leaders and promote awareness. VOSAP also allows users to make an action pledge that supports people with disabilities so communities can correspond with allied parties. Parking Mobility is another phone app that offers a self-reporting mechanism, although this service allows users to report abuse of accessible parking spots. For partnering communities, such reports are forwarded to local law enforcement and citations are mailed to the registrant of the vehicle. Please contact Parking Mobility to inquire about getting your community involved in this program. There are also many other phone apps designed for personal assistive use such as Be My Eyes (navigation for blind and visually impaired), RogerVoice (subtitled phone calls), Miracle Modus (self-relief for Autistic persons), and Medication Reminder (people with Alzheimer’s and dementia). As a result of these diverse phone apps, there are multiple ways for people to self-advocate as well as spread information about accessibility.
As demonstrated, social media and digital technology have engendered revolutionary ways to address issues salient to the disability community, allowing self-advocates and allies to communicate about current challenges, successes, and resources. Therefore, simply opening your computer, tablet, or phone to navigate these issues, alongside other intersecting causes, shines a brighter light on the importance of disability rights, access, and representation in the 21st century.
Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.
Representation shapes the way we view the world – media regularly exposes us to perspectives and truths that we may otherwise never experience. Disability is one perspective that abled society frequently avoids. Persons with disabilities are heavily under-represented in media, and existing representations often perpetuate harmful stereotypes. Persons with disabilities are rarely depicted with agency or dignity. More often, disability in media is associated with helplessness, pity, or as a perverted source of inspiration for abled people.
However, times are changing. GLAAD’s Where We Are On TV is an annual report on diversity in television; findings from the recent 2018-2019 television season report a positive trend on representation for people with disabilities. Last year’s report found that 1.8% of all series regulars on primetime broadcast television had disabilities, while this year’s report lists 2.1%. This is only a small increase, and still under-represents the proportion of Americans with disabilities. According to the United States Census Bureau, Americans with disabilities make up between 12–19% of the population (variation in range is due to inconsistent definitions of disability).
But that 2.1% consists of a variety of compelling characters with disabilities. Popular television shows Speechless is groundbreaking for its representations of differently-abled youth. The show is centered around a young man with cerebral palsy, JJ, and his wacky family and friends. Speechless is unique in its approach of wholesome humor to deal with the difficulties of navigating personal agency, inclusivity and the struggles of teen life. Disability is so often viewed from a lens of misery, alienation, and darkness, but this show handles tough topics without demonizing disability. Speechless demonstrates that life with disabilities is much like any other, filled with pain but also joy and laughter. Though this is only one show, Speechless empowers persons with disabilities and sets a better tone for disability representation.
Despite under-representation in mainstream media, people with disabilities have found power in creating a culture of agency within their respective communities. Superfest, a disability film festival, was held in October of this year and showcased a range of perspectives from quadriplegia to cerebral palsy to Deafness. Social media allows persons with disabilities to present their own image of independence and beauty, empowering themselves and others. Advocate/blogger/model Mama Cax is an amputee woman of color with nearly 200k followers on Instagram (@mamacaxx). Cax, who modeled in popular designer brand Chromat’s inclusive Pool Rules campaign, is an inspiration to many women with disabilities who have never seen bodies like theirs proudly and unapologetically represented as beautiful.
Positive strides are also being taken in terms of political representation. Notable people with disabilities in politics include former president Franklin Delano Roosevelt and former Senator Tammy Duckworth. FDR was the first and only United States president who used a wheelchair; Duckworth was the first woman with a disability to be elected to Congress. Currently, no member of Congress has openly identified as having a disability, but the recent midterms did include several candidates with disabilities. Disability Action for America is an organization dedicated to increasing representation for persons with disabilities in the American political arena. Disability Action for American endorsed 16 candidates and raised money to aid their campaigns through the grassroots effort Disability Action Network. With their help, Jennifer Longdon is the first full-time wheelchair user to be elected to Arizona’s State Legislature.
“I think that my own marginalization, my own minority status, gives me a point of view that some of the other candidates might not share. It’s all interconnected. We’ve got to work together to get solutions… It touches education and employment. It touches housing and public transportation and health care and how the criminal justice system works. It touches disability and being LGBTQ, disability and being undocumented, disability and being black or brown, disability and being poor, being uneducated, being whatever else that made you ‘other.” – Jennifer Longdon
People with disabilities are a large and significant community. Increasing representation in media and politics is a critical step towards the acknowledgement of the rights of persons of disabilities at all levels, in all arenas. The examples discussed in this blog are few, but I believe that representation will grow from here. As more people see disability through better representation, disability becomes less distant and more easily understood and accepted. Disability advocates and activists are already growing in number as social justice movements have made efforts towards inclusion and intersectionality. These factors combine to create a positive force for change. Though there are still plenty of barriers to dismantle, disability representation and inclusion in society is on an upward swing.
Today, December 3, 2018, is the International Day of Persons with Disabilities (IDPD), an observance promoted by the United Nations (UN). This year’s theme, “Empowering persons with disabilities and ensuring inclusiveness and equality,” accommodates the 2030 Agenda for Sustainable Development’s pledge to “leave no one behind” which envisions sustainable urbanization, namely through a smart-city approach that prioritizes digitalization, clean energy, technologies, and service delivery. Such ambition is salient to persons with disabilities because, above all, achieving these goals will result in communities that are more accessible and inclusive for everyone.
It is argued the main contribution to why persons with disabilities have been excluded from public life is the practice of the medical model of disability (MMD) which embraces the perspective of non-disabled persons, reducing persons with disabilities to dysfunctional people in-need of medical treatment, with emphasis on normative functioning of the body. As a result, persons with disabilities are often assigned a sick role that exempts them from activities and expectations of productivity, leaving them as passive recipients of medical goods and services. These medicalized expectations of normality, restoration, and functional independence can devalue the lived experiences of persons with disabilities, thus inviting discrimination into their daily lives.
On the contrary, the social model of disability (SMD) challenges the knowledge/power differential employed by medical authorities and suggests empowerment for persons with disabilities, ultimately strengthening the patient role and influencing changes in treatment paradigms. Furthermore, the SMD argues that social practices are what disable persons with impairments, placing many persons with disabilities into isolating circumstances and preventing full civil participation. Whether it be employment in Alabama or being a refugee in Kenya, the SMD challenges the MMD by suggesting persons with disabilities are an oppressed group that experiences discrimination and deserving of equal treatment.
On December 13, 2006, the UN adopted the Convention on Rights of Persons with Disabilities (CRPD), an international agreement which details the rights of persons with disabilities and lists codes for implementation, suggesting both states and disabled people’s organizations (DPOs) are to coordinate to fulfill such rights. In the following years, nations spanning the globe have ratified the CRPD, such as Jordan (2008) and Ireland (2018), thus strengthening protections for persons with disabilities. Although the United States is one of the only nations to have yet ratified the CRPD, this international document is largely modeled after the Americans with Disabilities Act (ADA), signed in 1990, which prohibits discrimination toward persons with disabilities. As a result, we are only seeing the beginning of what is to come for accessibility and inclusion for persons with disabilities, both domestically and globally.
Disabled people celebrate the passage of The Rights of Persons with Disabilities Bill, 2016 by the Lok Sabha, in New Delhi. Source: Hindustan Times, Creative Commons
To commemorate IDPD 2018, the Institute for Human Rights is holding a blog series today that addresses access, inclusion, and representation for persons with disabilities, namely through the influence of media and power of politics.
“Let the shameful wall of exclusion finally come tumbling down.” – George H.W. Bush at the signing of the ADA
Most of us have been told at some point to respect our elders. Opening doors, assisting in street transit, carrying groceries — all of these social niceties are expected to be paid specifically to older members of society. Respect for elders seems to occur universally as a cultural norm. Korean culture joyfully celebrates the one’s sixtieth birthday as the passage into old age, while honorific suffixes such as “-ji” in Hindi and “mzee” in Swahili indicate longstanding cultural respect for one’s elders. Some Ecuadorian cultures believe that their elder shamans, or mengatoi, become powerfully magical as they age (Jacobs). China even made it illegal to neglect one’s parents, outlining the legal duties of adult children to include frequent visitation and “occasional greetings” (Wong). Older people in America engage in vigorous self-advocacy, making the AARP one of the largest interest groups in the nation at nearly forty million members.
So why then does society reflect the exact opposite of these norms? Old people are treated as feeble, unfortunate beings who are shown courtesy in public and yet face widespread discrimination. Both pernicious and insidious, ageism is defined as “the stereotyping and discrimination against individuals or groups on the basis of their age; [forms of ageism can include] prejudicial attitudes, discriminatory practices, or institutional policies and practices that perpetuate stereotypical beliefs” (World Health Organization). Ageism is an “ism” that is just as socially impactful as other forms of discrimination, yet the topic is rarely addressed and often disregarded. Despite lack of discursive engagement, ageism is a unique type of social discrimination in that it can transcend all other human identities. The process of aging affects every human being regardless of one’s sexuality, race, and political ideology. Most of us will eventually pass the cursed line that society demarcates between youth and old age and must suffer from the hostile, deeply discriminatory system that we ourselves once benefited from in our youth — and what a pervasive system it is. Surveys show that a whopping 80% of people over sixty have experienced some form of ageism (Dittman). Tad Friend supplies this neatly unpacked explanation in an article published by the New Yorker:
“Like the racist and the sexist, the ageist rejects an Other based on a perceived difference. But ageism is singular, because it’s directed at a group that at one point wasn’t the Other—and at a group that the ageist will one day, if all goes well, join. The ageist thus insults his own future self.”
The Long Road. Source: Hansel and Regrettal, Creative Commons.
In just two years, it is predicted that more people will be over the age of sixty-five than under the age of five for the first time in Earth’s history (United States Census Bureau). In fact, according to the United Nations, the number of older persons is increasing more rapidly than other age group. This phenomenon is known as the “graying” of a population, and constitutes an urgent issue for affected countries. As people age, they become less able to physically care for themselves and usually exit the workforce at some point to retire for the latter part of their lives. As health conditions do generally worsen with age, the demand for medical and/or personal support services grows as older people continue to age and retire.
This becomes an issue when the size of a country’s workforce becomes insufficient to fill the demands of service-dependant older people. In nations with large workforces, the opposite issue — lack of opportunity for employment — still disproportionately harms older people. Many industries, particularly in America, push out older applicants and terminate veteran employees in favor of younger options. As industry culture has begun to tilt in favor of youth, older people have experienced a massive amount of workplace ageism. Nearly 65% of Americans between the ages of 45 and 60 had either seen or experienced age-based discrimination in the workplace (AARP). This may seem like a trivial issue, but unemployment is a dangerous state to endure at advanced ages. Worsening health conditions go hand in hand with both lower income and increased age; the combination of these factors can be fatal.
So why does ageism even exist? Princeton researchers found that most ageist arguments stem from issues with consumption (old people already consume too many scarce resources), identity (old people try to act younger than they are), or succession (old people had their turn, now they should move out of the workforce/society to make space for the new generation). All of these issues — consumption, identity, and succession — frame humanity in a way that associates one’s value with their usefulness to society. However, human beings should not be defined by their utility. Simply put, old people exist. They form one of the largest populations on the planet, and are rapidly growing. We cannot deny older people the dignity that we (supposedly) award to all else simply because they are perceived as “useless” to society. Human rights cannot and should not be applied conditionally.
This unfortunate phenomenon is surrounded by the related topic of disability. According to the 2016 Disability Statistics Annual Report, 35.4% of Americans over the age of 65 had a disability, which is over three times higher than the rate of working-age (18-64) Americans at 10.4%. Like advanced age, disability is also perceived as a barrier to social utility. Age and disability together form a potent one-two punch of compound discrimination, making older people with disabilities extremely vulnerable to abuse and exploitation.
Untitled. Source: Bas Bogers, Creative Commons.
Elder abuse, as it is termed, is widespread but often under-reported. National rates are reported to be around 10%, though researchers at the prominent New York Elder Prevention Society found self-reported rates of elder abuse to be up to 24 times higher than the documented rate. Only 3% of older people in New York officially reported any form of elder abuse, though nearly three-quarters self-reported that they have experienced neglect or financial, physical, sexual, and emotional abuse. This number may be inflated by the instances where individuals experience multiple types of abuse, making exact numbers more difficult to isolate. The most common forms of elder abuse are financial and physical/sexual abuse, which can occur concurrently.
Nursing homes, meant to protect and nurture their patients, are actually one of the most dangerous environments for vulnerable older persons with disabilities. The Nursing Home Abuse Center reports a nursing home abuse rate of about 44%, and a neglect rate of nearly 95%. Elder abusers are rarely prosecuted due to stigma, social isolation of the victim, lack of support services, inaccessible reporting, and proximity of abusers. Relatives constitute about 90% of elder abuse perpetrators, which often makes the victim reluctant to prosecute their own spouses, adult children, or other relatives.
Skin. Source: Victor Camilo, Creative Commons.
Direct abuse and neglect of the elderly is widely sustained by the deeply pervasive public attitude of hostility towards aging. Beauty products are regularly marketed as “anti-aging,” covering up the crows’ feet, varicose veins, liver spots and silver hairs that inevitably accompany a well-lived life. Most of the stigma is inevitably directed at aging women, as femininity carries the heavy burden of visual appeal. The cosmetic surgery industry is booming as women are pressured to appear as veritable supermodels long after the glow of youth has faded. Social media surrounds us with visuals of gorgeous, toned, smooth-skinned women who never seem to age a day, while the rest of us have to keep up with whatever products, surgeries or diets we can find.
Gone are the days where women past a certain age could relax into frumpy mom jeans and orthopedic tennis shoes without fearing judgment. Modern grandmothers now face the strenuous expectation to maintain a Helen Mirren-esque figure with the style and poise of Meryl Streep. Notably, these two women are some of the very few well-known older actresses; both have had to work tirelessly to achieve that notoriety, considering Streep’s record-breaking two-dozen Academy Award nominations and Mirren’s prestigious Triple Crown of Acting that has only ever been awarded to 23 people. It’s undeniable that Hollywood has a major problem with representation of women over thirty. Men in the acting industry get a few extra decades of “silver fox” stardom while women face rejection at first wrinkle.
Lean on Me. Source: Amro, Creative Commons.
Ageism sometimes feels like an inescapable facet of society, but it shouldn’t have to be. Encouraging and celebrating old age will eventually serve to benefit everyone, as positive attitudes towards aging have been shown to increase lifespan by nearly eight years. Elderly people have had autonomy and dignity systematically stolen from them through attitudes of derision and pity– they are constantly viewed as either cantankerous burdens to society or doddering, wretched old fools. One’s social contribution or lack thereof should not be a determinant in preserving human dignity. After all, human rights are for all humans, right?
From here, we have to do better on a global scale. Any success in reducing ageism requires confrontation of our own internal prejudices, since youth are the major perpetrators of age-based discrimination. The efforts we make today in reducing oppression for older individuals will directly impact our future experiences. Psychologists have found three major components essential to active engagement in fighting ageism:
Social integration
Often, elderly individuals are unable to fully participate in society due to social hostility and lack of accessibility. Many of us have not been educated on topics relating to older people, and some even may find engaging with the elderly to feel uncomfortable. Fuller integration into society would foster respect for the aged community, as increased public presence of older individuals would promote culture of tolerance.
Reduce cultural shame
Current media culture is incredibly toxic towards older people, and portrays the elderly in a negative light far too frequently. Advertisements should attempt to portray older people with respect to their human dignity, rather than the foolish, bumbling representations that are far too common in current media.
Accept aging as a fact of life
Ageism often stems from personal fears of death and dying. This fear is incredibly common but damaging to both society at large and to individuals who hold them– ironically, negative attitudes towards aging have been shown to decrease lifespans. To combat this, old age should be normalized and celebrated.
Clearly, ageism is not something that can be eradicated at all once. It requires active change on both an institutional and personal level, as age-based discrimination is deeply ingrained in cultural attitudes and everyday interactions. Monumental as it may seem, ageism is still an issue that we must tackle if we ourselves are to experience old age with the dignity that all humans deserve. So remember to always respect your elders, whether out of regard for human dignity, self-preservation, or both.
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