Breathing Lessons: Disability Rights in the Wake of COVID-19

The novel coronavirus (COVID-19) has provoked an unprecedented reality for much of the global population by streamlining widespread bureaucratic frustration, health anxiety, and social distancing. Most people know that older adults and people with underlying health conditions are disproportionately affected by COVID-19, although many people fall under both these categories and identify with a disability. Also, due to the limited resources available to treat people with COVID-19, concerns have emerged about who receives what type of care. This would force health providers with the grim task of dictating whose lives are worth saving. This blog addresses concerns about rationing care amid the influx of COVID-19 patients and how this might affect the largest minority group in the United States (26%) and world (15%), people with disabilities.

Word Health Organization suggests COVID-19 is particularly threatening to people with disabilities for a list of reasons: (1) barriers to implementing proper hygienic measures, (2) difficulty in social distancing, (3) the need to touch things for physical support (e.g. assistance devices; railings), (4) barriers to accessing public health information, and (5) the potential exacerbation of existing health issues. These issues add insult to injury because, even without COVID-19, people with disabilities by-and-large receive inadequate access to health care services. This is largely due to the competitive nature of health systems which value profit maximization and, thus, disadvantage people with disabilities as consumers in the health care market.

Recently, select states and hospitals have issued guidelines for health providers that would potentially deny people with disabilities treatment for COVID-19. Two entities, Alabama Department of Public Health (ADPH) and Washington State Department of Public Health (WSDPH), have recently come under scrutiny because of their efforts to fulfill such guidelines.

ADPH’s Emergency Operations Plan suggests that ventilator support would be denied to patients with “severe of profound mental retardation”, “moderate to severe dementia”, and “severe traumatic brain injury”. This controversial protocol has recently grabbed the attention of Alabama Disability Advocacy Program and The Arc thus leading to a complaint with U.S. Department of Health and Human Services Office for Civil Rights (OCR) regarding discrimination toward people with intellectual and cognitive disabilities.

With Washington notoriously being one of the first COVID-19 hotspots, WSDPH and the University of Washington Medical Center have come under fire for their plans to develop a protocol that would allow health providers to access a patient’s age, health status, and chances of survival to determine treatment and comfort care. These efforts have been confronted by Disabilities Rights Washington with their own complaint to OCR that declares any medical plan that discriminates against people with disabilities effectively violates the their rights and is, therefore, unlawful.

OCR swiftly responded to these concerns, as well as those from Kansas and Tennessee, by stating that, even in the case of pandemics, hospitals and doctors cannot undermine the care of people with disabilities and older adults. OCR Director Roger Severino exclaimed, “We’re concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability,” and “…that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.”

Also, with New York currently having most of the U.S.’s confirmed COVID-19 cases, they may very well be the first state to face the imbalance of available ventilators and patient demand. Disability advocates have recently decried verbiage in New York’s Public Readiness and Emergency Preparedness (PREP) Act that could provide immunity from civil rights for some patients. Thus, U.S. state and federal powers are playing tug-of-war with the status of disability rights during the COVID-19 crisis.

Not Today #COVID19 Sign Resting on a Wooden Stool.
Not Today COVID-19 Sign on Wooden Stool. Source: Pexels, Creative Commons.

However, these concerns are not limited to the U.S. In the developing world, many people with disabilities are segregated from their communities in overcrowded facilities, while thousands of others are shackled and incarcerated. This weak enforcement of disability rights positions people with disabilities, in countries such as Brazil, Croatia, Ghana, India, Indonesia, and Russia, at-risk of further inhumane treatment by receiving limited or no appropriate care related to COVID-19. As a result, Human Rights Watch urges state and local authorities to return these populations to their families and demand they provide needed support and services within their communities.

Nearly every country in the world has ratified the United Nations’ Convention on Rights of Persons with Disabilities (CRPD) which aims to fulfill the human rights and fundamental freedoms of people with disabilities. More specifically, Article 25 of CRPD suggests people with disabilities have the right to non-discriminatory health care and population-based public health programs. Thus, nearly every person with a disability around the globe is associated with a governmental power that claims to be dedicated to fulfilling the promise of CRPD. However, in the wake of COVID-19, will these words be put into action?

These unprecedented events are a turning point for how we view our bodies, health, and communities. This is also an opportunity to view the world through the perspective of those in your community such as people with disabilities who represent an array of impairments, challenges, and experiences. Despite boredom and apathy being at the forefront of many people’s isolation, images of life versus death surround others, and for a good reason. In these decisive weeks, and likely months, there has never been a greater time for people in the U.S. and abroad to acknowledge that disability rights are human rights.

Misleading Media: Disabilities in Film and Television

 

Rows of seats in a movie theater.
Movie Theater Seats. Source: I G, Creative Commons

While one in four people in the United States live with a disability, it is unlikely that a person would give that estimate based on representation in popular media.   

Is this because of an overall misunderstanding about the parameters of disabilities among the general public?  Or do the producers of film and television realize they are failing to accurately represent society and just not caring? 

Even the media that currently feature characters with disabilities are often misleading and lean heavily into pre-existing, incorrect stereotypes.  Manifestation of this issue draws parallels with insensitive stereotypes about race, gender, and sexuality to the use of common (over-used) archetypes.   

Character Archetypes 

One way in which film and television often generalize people with disabilities is using character archetypes.  It worth noting that archetypes are not inherently bad, rather they become a problem when they are focused around a specific group of people. As a result, this creates/reaffirms the assumptions that people make about others.  When it comes to characters with disabilities, it is especially problematic, as these characters are rarely depicted outside of their archetypes while non-disabled groups may be more likely to have a nuanced portrayal.  

There are three main archetypes used in the creation of characters with disabilities: the helpless victim, the evil villain, and the inspirational hero. 

The Helpless Victim 

The helpless victim character is severely limited by their disability and is depicted as having little chance of happiness or normalcy in life unless their disability is removed.  This character is depicted as needing to be “saved” from their condition and are designed to evoke pity and sympathy from the audience rather than be viewed as a regular person.  These characters are often rescued from their disabilities through “miraculous” events whether it be an “unexplainable change” or directly stated as part of an intervention by a higher power.  Not only does this lead people to look at people with disabilities with the same pity they give fictional characters, but it also fosters an inaccurate depiction of many people’s experiences with their own disabilities.  Contrary to these depictions, people can have disabilities and live happy lives at the same time.  The helpless victim archetype is also sometimes used for comedic purposes. For example, a person with a disability does or experiences something related to their disability that mildly harms them or is considered inappropriate by societal norms.  This is shown in how Forest Gump is depicted in relation to his intellectual disability.  This allows people who do not have disabilities to feel comfortable with not taking people with disabilities seriously or giving them the same respect they give people who do not have disabilities.   

The Evil Villain 

The second main archetype is the evil villain, often designed as a dangerous and uncontrollable monster.  This character is often seen in horror films, such as the Unbreakable trilogy, Gerald’s Game, and many more.  The horror genre is notorious for using both physical and mental disabilities (often those that the general public is not well-educated on) to frighten audiences.  Since many of the disabilities that are targeted by this archetype are unfamiliar to most people, many audiences walk away having absorbed a great deal of misinformation and a fear of people with these disabilities.  These representations have led many people to believe that people with disabilities, particularly any mental disorders that are unfamiliar, are dangerous and should be avoided.  In reality, people have a tendency to largely overestimate the likelihood that a person with a mental health disorder will become violent.  Additionally, when people with these kinds of disabilities do become violent, is largely linked to other factors, such as substance abuse and family history. 

An example of the evil villain character is the Beast from M. Night Shyamalan’s Unbreakable trilogy.  The Beast is an alter in a system with Dissociative Identity Disorder (DID) that is depicted as having super-human abilities and a desire to get rid of all impure people in the world.  Throughout the series, he is depicted clearly as a violent monster.  For many people, these movies were their first exposure to DID, and, though it did not necessarily convince people that DID gives people supernatural capabilities, this has led to many people having a serious misunderstanding of DID and a fear of people who experience the disorder.  Even the “nice” alters in the system were depicted in a negative light, as they helped the Beast carry out his evil plans.  This representation of DID is also problematic because there are so many misleading or definitively incorrect ideas about DID propagated in these films.   

Shyamalan himself stated, “I wanted to take something scientific and psychologically proven and keep going with it.  The first two, three steps have been proven, then the next one was not proven, but it’s a question. Do you believe it, what I’m suggesting?  It is important to remember that real people have disorders like DID, not just fictional characters.  When you willingly spread misleading ideas about them, you are potentially causing serious harm to their present and future wellbeing which you can read more about in this blog. 

A parking spot reserved for people with disabilities.
Parking bay. Source: David Morris, Creative Commons

The Inspirational Hero 

The third main archetype is the hero/inspirational character with a disability is held up as an example of someone “overcoming the odds”.  These are the characters that lead people to say, “well if they can do that, then I can do anything!”  While it is considered a positive stereotype, it is nonetheless problematic for several reasons.  First, it suggests that the only way a person can be happy is if they are “cured” or if they overcome their disability.  It specifically frames disabilities as enemies to defeat rather than a part of daily life.  It can also lead people who do not have disabilities to believe that people who do have them will be fine if they only try hard enough.  As a result, this may make them believe they do not have to do anything to accommodate people with disabilities.  Depicting people with disabilities this way can also lead to people without disabilities looking to them for sources of inspiration and examples of courage rather than as regular people. 

Paul Hunt’s List of Stereotypes 

A 1991 study by disabled writer and activist Paul Hunt established a list of ten common stereotypes of people with disabilities.  This list includes depicting people with disabilities as: “pitiable/pathetic”, an “object of curiosity or violence”, sinister or evil, the “super cripple” (as if having a disability anoints them some sort of superpower), a way to establish atmosphere, laughable, their own worst enemy, a burden, “non-sexual”, or being unable to participate in daily life.    

The Connection to Human Rights 

Many people develop their understanding of different disabilities through the representations they see in film and television which impacts the way people are viewed by their local communities and, therefore, their ability to access their human rights.  The way students are treated by their classmates impacts how they benefit from their educational experience (Article 26 of the United Nations Universal Declaration of Human Rights).  The way people are treated by their employers (or potential employers) and co-workers impacts their access to a favorable work environment without discrimination (Article 23).  The way people are treated holistically by their community impacts their ability to actively participate in their communities (Article 27).  A community’s view of people with disabilities can also impact their willingness to make accommodations for them which further affects their ability to access the aforementioned rights.  

How Do We Identify Good Representation? 

One aspect of good disability representation is that a character’s purpose is not solely based on their disability.  If the character were replaced with a non-disabled character, without changing any other aspects of the story, would they have “a story, goals, relationships, and interests”?  In a good piece of representation, the answer would be “yes”.  While a disability might be a significant part of a person, it is not the only characteristic that shapes their experiences.   

The Entropy System, a system with DID who makes educational YouTube videos about DID, has come up with a list of four criteria to identify good representations of DID in media, three of which could be applied to other disabilities as well: 

  1. Does it “communicate proper diagnosis and treatment”? 
  2. Does it address the cause of the disability? 
  3. Is the character relatable?  Are they well-rounded and realistic? 

An Example of Good Representation: A Quiet Place 

John Krasinski’s film, A Quiet Place, is a wonderful example of quality representation.  In the film, the Abbot family is fighting to survive in a world where making a sound could be a death sentence.  Reagan, the daughter in the family, is deaf, which has led to the entire family’s ability to communicate silently through American Sign Language (ASL).  Reagan’s disability is not treated as a burden or as a superpower.  While their knowledge of ASL is a key tool in the family’s path towards survival, it does not change the way Reagan is treated as a character.  She is a normal kid.  She is a multi-dimensional character who has strong relationships with her family and faces personal struggles that are unrelated to her disability.  The character is also played by a deaf actress, which is an important part of good representation and surprisingly rare on television and in film. 

The existence of quality representation for people with disabilities is increasing in television and in films like A Quiet Place, but we still have a lot of work to do.  It will take time, but we can hopefully look forward to a day where people with disabilities are well represented in popular media. 

A Seat at the Table: Learning the True Meaning of Representation at COSP12

Image showing a sculpture of a globe outside the United Nations building in New York.
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.

Monstrous Misrepresentation: Disabilities in the Horror Genre

Empty seats in a movie theater.
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 grave robber, 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 video that 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 why quality and accurate representation is so important. 

The symbol for handicap parking in yellow paint on black pavement.
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. 

Violent Ableism: A Structural Epidemic

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. 

Protesters from Autistic Self-Advocacy Network hold signs that say "I am not a puzzle, I am a person" and "Autism Speaks does not speak for me" at the Walk Now for Autism fundraiser in Portland, OR.
“not a puzzle.” Source: Philosophography, Creative Commons.

As I have discussed in earlier posts like Disability 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. 

This image shows a red figure in a wheelchair that appears to be made by fingerpainting. There are three lights shining at the top of the image.
“Disability.” Source: Abhijit Bhaduri, Creative Commons.

Psychological / Internal Violence 

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 disability here and here. 

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). 

 

A man in a wheelchair looks back as he wheels down the street. He is wearing a bright pink hat and has a backpack hanging off the handles of his chair.
“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. 

 

Disability Rights, Employment, and Housing in a Cross-Cultural Perspective

three men unpacking soda for distribution
“Men at Work” by Andreas Wulff, Creative Commons

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 of ableism, 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.

The Liffey River, Dublin, Ireland
“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.

The Al-Saraya al-Hamra Fortress in Tripoli, Libya
“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.

A Hopi House
“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.

Washington Group (2018, December 4). Statement of rationale for the Washington Group general measure on disability. Retrieved from http://www.washingtongroup-disability.com/wp-content/uploads/2016/01/Rationale_WG_Short-1.pdf

Disability History: Overlooked but Not Forgotten

*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.

 

Disability activist Stella Young chats with Paralympic medalist Ann Cody. Both women use wheelchairs.
“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.

A group of disabled protesters are staged outside of a healthcare clinic, protesting welfare cuts that have harmed many disabled people in the UK.
“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.

Three people in wheelchairs face each other while talking.
“Creative Accessibility Mapping Tour.” Source: Andi Weiland / SOZIALHELDEN, Creative Commons.

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.

A painting by Frida Kahlo features two versions of herself side by side. One is in a white dress, the other in a blue top and green skirt. Both Fridas' hearts are visible, and connected by a vein.
“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.

Disability Advocacy and Technology in the 21st Century

Images of The Gang of 19 and “Capitol Crawl” will forever be remembered as pivotal moments in the U.S. disability rights movement alongside international achievements such as the first Paralympic Games in Rome, African Decade of Disabled People, and UN Convention on Rights of Persons with Disabilities. There are those who foster the value-based assumption that picketing, chanting, and public fervor are the appropriate methods to fighting the good fight. However, as digitalization rapidly enters our homes, schools, and places of work, modern technology offers a myriad of new ways to advocate for the rights of people with disabilities, namely social networking platforms and phone apps.

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.

Representing Disability 

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 1219% of the population (variation in range is due to inconsistent definitions of disability).

Three people in wheelchairs face each other while talking.
“Creative Accessibility Mapping Tour.” Source: Andi Weiland / SOZIALHELDEN, Creative Commons.

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.

“Ignite Phoenix 9 – Jennifer Longdon.” Source: Sheila Dee, Creative Commons.

“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.

International Day of Persons with Disabilities 2018

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