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.

Golf and Life Lessons: The Dennis Walters Story

On Wednesday, February 5th, the Institute for Human Rights co-sponsored an event alongside College of Arts and Sciences and Lakeshore Foundation to present World Golf Hall of Fame inductee Dennis Walters. During his lecture, he addressed his passion for golf, experience with disability, and journey of perseverance.

Raised in New Jersey and playing college golf at the University of North Texas, Walters had dreams of being on the PGA Tour. Amid his burgeoning career as a professional golfer, Walters experienced a golf cart accident that left him paralyzed from the waist-down. Following the accident, Walters underwent four months of excruciating rehabilitation, peering at the golf course across the street with a desire to drive a ball across the green. Although his doctor claimed he would no longer play golf, but Walters’ vision suggested otherwise.

Following his rehabilitation, Walters moved back home with his parents in New Jersey while he became accustomed to his new way of life. One day, he finally mustered the courage to swing a golf club. With help from his father, they had a makeshift system that included a pillow, waist strap, rope, and a tree to assist with Walters’ swing. As a result, Walters was hitting golf balls as he did before which kept his golfs dreams alive. The first time Walters played on a course after his accident, he received cheering support from fellow golfers and, soon after, a re-purposed bar stool for his golf cart. Thus, The Dennis Walters Golf Show was born.

However, not everyone was originally thrilled about Walters’ show. After his father wrote a letter to Jack Nicklaus and told him of his son’s ambition, Walters’ career took off. Although Walter’s show is not just any golf exhibition, it’s a performance! His show includes golf shots with a three-headed club, fishing rod, radiator hose, gavel, left-handed club, crooked club, and tall tee as well some bad jokes and a four-legged sidekick. After more than 40 years, Walters has traveled over 3 million miles and done over 3,000 golf shows for fans near and far.

Walters exclaimed, “There’s no expiration date on your dreams” and offered the crowd his five P’s for success:

    1. Preparation (establish a plan)
    2. Perspiration (hard work pays off)
    3. Precision (stay focused)
    4. Passion (live what you do)
    5. Perseverance (stay on the path or else the other four don’t matter)
This is a picture of Walters posing with members of UAB Men's and Women's Golf teams.
Walters with members UAB Men’s and Women’s Golf teams. Source: UAB Institute for Human Rights

Walters asked himself, “Why have this dream?”. At times, he felt entirely hopeless about golfing again. However, golf was like therapy to him, both mentally and physically, which he claimed was better than medicine. He then closed by expressing, “The good about golf is the people you know”, which highlights the importance of inclusion and acceptance of people with disabilities on and off the green.

Thoughts on Homelessness in Birmingham

Image of shelter made of cardboard boxes.
David Hilgart. Home. Creative Commons for Flickr.

During the winter break, I spent a lot of time in Birmingham, staying with my sister and with friends, far away from my farm and home in Columbiana. Our farm is more like an animal rescue or sanctuary that does not generate much income but enough to accommodate. Besides hundreds of animals being surrendered or abandoned, we have even had strays walk up our driveway. Our goat, Fred, was the first I remember as we were in disbelief that a goat was just walking the streets and checking out the very sparse neighborhood, curiously coming up to us with some twine wrapped around his neck. For Fred and everyone to follow, my parents and family members have never refused taking in, rehabilitating, or rehoming an animal in need, so maybe that’s why it was so much more obvious of how much worse the picture I have seen in Birmingham is, or what this article is about. In Birmingham, it is people living in the streets witnessed by a city full of people. Walking through five points and down 20th, there is so much evidence and example of homelessness.  Passerby witness but rarely realize that they are seeing many at their most vulnerable or the harsh, daily routine.

Image of street and tunnel wall lined with bags and boxes and evidence of someone's home
Chris Yarzab. Creative Commons for Flickr.

Responsibility of the State

People experiencing homelessness face violations of many human rights, such as inaccessibility to safe and secure housing, an inadequate standard of living, education, liberty and security of the person, privacy, social security, freedom from discrimination, voting, and more which are interconnected.  These human rights are protected by several international human rights treaties. The International Covenant on Civil and Political Rights (ICCPR), the International Covenant on Economic, Social and Cultural Rights (ICESCR), and the Convention on the Rights of the Child (CRC), which bind the state to legal and moral obligations in realizing and protecting the rights of all people. Also, the right to housing recognized by international human rights law doesn’t just mean a right to shelter. It must be adequate and accessible. Battling and overcoming homelessness is not a task of charity as much as an act of justice. Our Public policy and structures should facilitate or lead to a dignified life in the United States. As one of the wealthiest nations in the world, we should figure out how to shelter or house those who are homeless.

No one is asking what happened to all the homeless. No one cares, because it’s easier to get on the subway and not be accosted.- Richard Linklater

More recently, I saw many cops parked in the middle of five points as they held up traffic to address some of the people I have seen more statically living there, which brought up the thought of criminalization of homelessness and left me wondering if those cops offer rides to shelters before the ride to a cell.

A look at more vulnerable populations

The most visible type of homelessness is what we see when we walk through Birmingham: people living on the streets or sleeping in the parks or street tunnels. However, more move between shelters and temporary homing maybe with their friends or relatives and more long-term shelter where their experience may not be included in the conversation of homeless persons.

Within 2018 records reported by Continuums of Care to the U.S. Department of Housing and Urban Development, there were almost 3,500 people homeless on a given night (280 were family households, 339 were Veterans, 158 were unaccompanied young adults (aged 18-24), and 540 were individuals experiencing chronic homelessness). Over 900 of those were concentrated in the Birmingham area. Over the year, there were 14,112 students who faced homelessness in Alabama.

A large portion of the homeless population is affected by mental illness. People with mental illness or other disabilities may face social isolation and may face chronic homelessness. Such individuals may require special types of accommodation or support that may be an obstacle to rehabilitation.  Health issues may cause a person’s homelessness as well as they may be intensified by the experience where poverty and lack of access to care contribute to disparities in health. Another thing to think about is when someone handicapped by a disability loses their parents or caretaker, who will take care of them or will they find tools to live? They could become homeless.

Through the lingering effects of systematic denial of equal rights and opportunities, African American are particularly overrepresented in this system facing a higher risk of poverty, housing discrimination, and incarceration than White Americans

Indigenous people face greater social and economic disadvantage such as lower levels of education or higher levels of unemployment which contribute to higher levels of homelessness in their communities

Women may make up a big portion of those forced to leave their homes fleeing domestic violence or sexual assault. Homeless women may become more isolated for fear of violence, rape, or other abuse. Further, a woman may be separated from her children if she is unable to care for them which challenges her parental rights.

Children and young people are disproportionately affected by homelessness. I have known many classmates and friends who have been homeless as they pursue their education at UAB. Also, Covenant House proclaims that every year, more than 2 million kids in America will face a period of homelessness (The link provides more enlightening and harder-to-swallow statistics). Youth like those emancipated from the foster care system may not have another option. In addition to general human rights laws, children are protected under special rights, like those afforded in the Covenant on the Rights of a Child which describes a higher standard of living and right to protection against neglect, cruelty, exploitation, etc.

Untreated depression and mental illness, self-medication and addiction, childhood trauma and chronic PTSD, abuse and any circumstance that may lead one to homelessness may also create a loop to imprison them. For example, where abstinence is a prerequisite or requirement for homelessness assistance programs, one may not receive help unless they quit, but one cannot quit without relief.

Image of person sitting on roadside
Pedro Ribeiro Simões. Creative Commons for Flickr.

A veteran should not have to stand on the asphalt with a cardboard sign begging for a living in a nation they helped secure and people should not be in the position to be turned down asking for food that was about to be thrown out. In fact, everyone has made contributions and continues to contribute to their society. Homelessness includes people who have paid or pay taxes and those who are paid less than a living wage. It includes people of all labels fleeing abusive conditions or facing escalating housing and living costs. It includes parents and it includes their children who have not had a chance. It also includes all students who are trying to pursue an education to hopefully get a job that will afford them housing. Besides all these achievements, many, including those facing chronic homelessness have endured full lives and have witnessed different forms of trauma. Still, they have survived the circumstances of homelessness, maintaining their humanity and resilience and- intentionally or unintentionally- being that example for others.

Also, keep in mind that going from place to place and not knowing what to do or where you will end up could understandably create a lot of pain and anger. Desperation or frustration may be harder to deal with. Being homeless could even make you apprehensive of ownership or pursuing certain routes that could be encouraged. However, everyone should be afforded options and certain securities.

10 Strategies to End Chronic Homelessness posted by the United States Interagency Council on Homelessness:

https://www.usich.gov/tools-for-action/10-strategies-to-end-chronic-homelessness

More immediate examples for anyone to help everyday

If it’s raining or about to, offer the warmth and privacy of an umbrella.

Offer to pay for an uber ride to a nearby shelter as some cannot walk to or have no means of transportation to one.

If you are not comfortable lending cash, you may offer supplies. You could keep these care bags of everyday products, essentials (maybe small shower things you could find in the travel section, gloves, hats, etc), or resources to offer or pass out at crowded shelters.

Invite others to the restaurant you are on your way to and share a meal if they are up for it. The conversation may also allow you to understand, accept, or appreciate their life and vice-versa. Once, a man I invited to eat with me on campus (in an environment where I felt safe enough to) proclaimed his version of Islamophobia (as that was the summation of a popular sentiment in America, especially during those Trump Campaign days) as he explicitly said he didn’t like Muslims when I revealed that of my identity. But it turns out, I was the first Muslim he had personally interacted with and realized he liked before the word “Muslim” exited my mouth. That could happen with anyone of course and homeless (or only hungry in this case) people are not to be “enlightened” and should not be expected to praise our deed, but the conversation and gesture can open this opportunity

Additional Resources:

Federal Links Relevant to homelessness:

https://www.hhs.gov/programs/social-services/homelessness/resources/federal-links/index.html

 

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.

Disability and Isolation in Our Modern World

by Marie Miguel 

a picture of a young boy sitting alone on a park bench
Source: Public Domain

There are many types of disabilities. There is no one way to be disabled. One thing is for sure, living with a disability can be challenging. The navigation of places that are not disability-friendly remains overlooked. Having a physical disability means there is a need to make sure areas and spaces are accessible, and if you have an invisible disability, like severe anxiety, there is a need to ensure that you are mentally and physically prepared against possible triggering. However, there are no guarantees.

Misunderstanding and disabilities

Having a disability isn’t easy in this world. You want others to understand you, but it’s exhausting to try to keep re-explaining your experience. Some days you want to live a regular life, and not think about how you are different from others. If you are living with a mental illness, you are often misunderstood. People do not understand what it is like to live with severe anxiety, mania, crippling depression, or PTSD. Having to fight a constant battle with your mind is extremely difficult to explain to someone who does not know or care what it is like. For example, the thought of leaving the house is terrifying for someone with agoraphobia or similar phobias, while many others have no thoughts about it.

The world is not accessible as it should be; in fact, it is quite the opposite. It is difficult to mask or pretend to be “normal.” According to NAMI, one in five people have a mental illness. Mental illnesses are considered disabilities. If your mental illness is severe enough to impact your functioning, you might isolate and fear to be around others because you’re stigmatized. It is not healthy for the human experience, as social isolation may cause loneliness, depression, physical health complications, and may lead to taking one’s life.

As a society, what can we do?

We must work to understand those living with mental illness as well as other disabilities. There is a lack of understanding of differences when it comes to our society. We expect people to be cookie cutters and the standard of “normal” does not accurately reflect our world in terms of the human experience. The human condition is that we are all unique. The ADA limited in its protections against discrimination due to the stigma surrounding the identification of disability. The “yes, I have a disability” box on applications is supposed to allow for accommodations. Yet, the fear of stigma often paralyzes many people from checking it; checking the box places you in a proverbial box. The impact of being “boxed” because of a disability can have a severe impact on a person’s state of mind and overall wellbeing. Additionally, the failure to comprehend and/or empathize with persons with disabilities can come off as judgemental and further exasperate the issues.

Preventing social isolation

It is tempting to want to isolate when you cannot seem to find a sense of community or belonging, but we, as a society, can prevent this from happening. Studies show that isolation is as harmful to our health as smoking fifteen cigarettes per day. It is important to remember that an answer is available. One of the things that we can do in addition to raising awareness for disabilities and the experiences of people living with disabilities is to pursue mental health treatment. If you have a disability, no matter what it is, talking about how society impacts you is empowering. Whether you work with a counselor in your local area or try online therapy, you deserve to be heard. Speak out and up, advocate for yourself and others with disabilities, and take care of your mental health because you deserve it.

 

Marie Miguel has been a writing and research expert for nearly a decade, covering a variety of health-related topics. Currently, she is contributing to the expansion and growth of a free online mental health resource with BetterHelp.com. With an interest and dedication to addressing stigmas associated with mental health, she continues to specifically target subjects related to anxiety and depression.

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. 

 

Book Review: Invisible No More – Police Violence Against Black Women and Women of Color

This book review was originally published in the Vulcan Historical Review, Fall 2018.  

Andrea J. Ritchie is a lawyer and activist. She writes Invisible No More “as an act of love, of mourning, of honoring, of commemoration, of liberation, as a contribution to our shared struggles, wrestling with the meanings of Blackness, privilege, solidarity, and co-struggling; of ‘survivor’ and ‘ally’” (5) for and from the community of which she is a member (11). The goal of Invisible No More is to establish recognition of the police brutality against women of color (us). She accomplishes this in several ways throughout this book. First, this book brings personal stories to the center and into focus by identifying the differences and commonalities among women of color. Second, it explores the various forms of police violence, as well as how race, gender, sexual orientation and ability to influence the action/expression of police violence. Third, it identifies patterns and paradigms within the controlling narratives which are rooted in colonialism, slavery, and structural violence. Lastly, it invites a discourse on aspects of the mass incarceration system previously invisible, including profiling and police brutality against women of color.

The book’s layout consists of eight chapters (2-9) that highlight various areas and interactions of police with women of color. Each chapter concludes with a resistance subsection wherein details of individual and collective resistance to the policing of gender takes a variety of forms at the local and national level (139). Ritchie bookends chapters 2-9 with chapter one, “Enduring Legacies” and chapter ten, “Resistance.” Within the pages, Ritchie questions the societal demand upon police for prevention of and response to violence while also challenging their contribution to the violence. Additionally, she ponders, “what would it mean to build structures and strategies beyond police that will produce genuine safety for women of color, especially in hostile terrain.” (18) She suggests that placing Black women and women of color at the center of the conversation shifts demands, analysis, and approaches (17).

Chapter 1 outlines the historical record of violence against women of color, inclusive of Indigenous women, by highlighting a portion of the controlling narratives. Colonization brought about the desecration and extermination of Indigenous identity and humanity. Sexual violence was a primary weapon. Ritchie introduces the concept of “the myth of absence” as a collective reductionist method. Employing the myth of absence allows for the normalization of invisibility under the guise of colonial establishment. This myth applies to both land and sea.

Masters of the enslaved utilized motherhood as an instrument of punishment under the oppressiveness of slavery. There was no shadow of law, so Black women became property, and with this new “label” came the disassociation their gendered status. This disassociation with womanhood dislodged the perception of femininity as well. “This system of constructed categorizations of Black women’s behavior and possibilities for existence persist to this present day… such narratives [mammy, Jezebel, subservience, tolerant, pain intolerant] inform police perceptions of what conduct is appropriate and permissible toward Black women.” (35)

The government positions immigrant women as a “control apparatus… for the regulation of sexual norms, identities and behaviors.” (37) This control functions as both a mode of discipline and a measurement of their suitability to contribute to the overall national identity (38). Stereotyped and prejudged, immigrants and queer/trans women extend beyond the normalized border standard of hetero, cis, white, etc. In other words, non-white women—whether with attitude, dress, and sexuality, size and skin tone—represent a deviation from the norm. To correct the “deviation,” a pattern of law enforcement arises to “structure and reinforce…perceptions” (41).

Chapters 2-9 describes the patterns of law enforcement applied to women of color. A summarization to the roots of the enforcement patterns comes from Arizona State University professor, Ersula Ore: “This entire thing has been about your lack of respect for me.” (58) The chapters expose how police, with impunity, make gender (for cis and/or queer/trans women) a sociopolitical site (139) of human rights abuses and violations as they view the bodies of girls and women of color as threats in public and private spaces (145). The gendered degradation and disposability of Black women (51-2) and the deep devaluation of motherhood and life for women of color (170) are merely two identifiable threads in the fabric of sexual violence within the police system (105).

Chapters 3 and 4 confirm that police brutality against women of color, includes minors and persons with disabilities. There is no escape from the profane overreaction of those “who make the rules up as they go along and often enforce them in deeply racialized ways” (75). In chapter 3, Ritchie builds upon the works of Monique W. Morris and bell hooks. They agree that schools—sites for the profound regulation and punishment of Black femininity– institute zero-tolerance policies and exact an “oppositional gaze” applicable disproportionally to girls of color, who are disrupting the peace or engaging in disorderly conduct by “having the audacity to demand to be treated with dignity” (73-8). Morris introduces age compression as a weapon in the arsenal that schools and law enforcement use against girls of color. Age compression is the inability to see children of color as children, because of this, they are handled and treated like adults of color (78). In chapter 4, with each incident involving police and women with a disability or mental health disorder, the women are either injured or killed. Thus, in both instances, the failure to respond appropriately due to the misapplication of stereotypes escalates but does not resolve situations.

Chapter 10 provides an extended culmination of the resistance subsections introduced in chapters 2-9. This chapter seeks to outline critical ways community activists and organizers, alongside survivors and the families of the victims, are turning violations into victories by piercing the bubble of silence. Ritchie repeats the underlying question of “what would freedom from fear look like for girls and women of color” while reminding the reader of the need to continually speak truth to power. Resistance, like violence, exists within the sociopolitical site of the body (139). Resistance draws those subjected to the margins by anti-police violence and feminist movements, back in and towards the center with the understanding that police are necessary for social order (205-7). However, the perpetuation of violence and the invisibility of that occurs during and after, can no longer remain in the shadows (206). Resistance reinstitutes the tradition of truth-telling through the reclaiming of bodies and humanity.

Two key strengths of this book are the inclusion of Ritchie’s personal experience and investment, and her purposeful build upon the works of Angela Y. Davis, Danielle McGuire, Beth Richie, Monique Morris, bell hooks, etc. By incorporating the works of other female activists/scholars who posit and bring a different angle to this issue, this book makes a significant contribution to recovering the missing female narrative within the mass incarceration canon and the US gender relations discourse. This is a huge plus for this book as “women of color” includes every non-white category and encompasses the fluidity of the gender/sexuality spectrum. Ritchie does not shy away from her critique of the embedded racial and gender bias within the American social system. Her frankness adds a crucial element to discussions on interracial relations and intra-racial relations.

Invisible No More: Police Violence Against Black Women and Women of Color is an off the beaten path collection of domestic violence and terror stories against humans being of color. It is difficult to read which, frankly, deserves a trigger warning. By reading this book, one begins to understand both the complexity and the root of Kaepernick’s protest, the demands of justice for women like Sandra Bland, Chikesia Clemons, and Deborah Danner, and the mindfulness of young girls like Naomi Wadler. It is a stark reminder that there is a notably, significant difference in the treatment of whites and non-whites by law enforcement, and if you are not outraged, you are not paying attention.

 

Disability Rights, Identities, and Narratives

Photo: By NC 2.0/USAID U.S

Disability rights is an increasingly important issue in our society. According to the U.S. Census Bureau, one in four people in this country have a disability. With such a large segment of our population facing a type of disability, it is crucial for the expansion and protection of disability rights. One way in which support for people with disabilities (PwD) can be increased is through the sharing of personal narratives of the experiences and lives of individuals with a disability. Narratives help to educate the public and prevent unintentional bias or stereotypes from causing harm to this community. Giving an individual with a disability an opportunity to open up and share their stories will help empower many of our friends, families, and neighbors and show that every single member of society matters and is appreciated.

Personal narratives are a great way to bridge the gap and inform the general population about disability issues. Oftentimes what people know about disabilities stems from limited education in schools or medical commercials. These outlets tend to focus on statistics and don’t address the issue on a personal level because most of the times they are not consulting an individual with a disability. Even though one in 4 people in this country have a disability, people lack a personal connection that allows them to fully understand the discrimination and ignorance that a person with a disability faces. In fact, it is common for individuals with a disability to have stories where people have stared at them, gawked at them, pointed at them, laughed at them, or even flat out harassed them in public. In all of these cases, PwD are not treated like normal people and are often made to feel ostracized. This disconnect needs to change and this mistreatment of people with disabilities needs to end. If people hear these stories from the viewpoint of a disabled person, then a personal connection is far easier to establish.

A personal connection between both communities is crucial. Empathy and understanding are needed to end fear and uncomfortable feelings when engaging with people with disabilities. It is important for people to realize that disabilities aren’t diseases you can catch. In fact, PwD pose no risk whatsoever to those around them. Listening to PwD talk about their conditions, lives, and how they overcome their disabilities to live a fulfilling life dispels all rumors and falsehoods about disabilities. Stereotypes and prejudice disappear when people see that disabled people are just like them and that disabilities do not define an individual. Each PwD has their own unique identity that is not affected by their disability.

To combat the lack of understanding, misinformation, and stereotypes about PwD and diminish the gap that exists between both communities. It is important to create a safe place for this community. A safe place is an environment where PwD feel comfortable enough to express themselves and share their stories without any fear of judgment or repercussions. Such an environment would make them feel normal and not different from the people around them. It is high time that disabilities were normalized and that PwD are given the same treatment as anyone else. Creating a PwD inclusive space allows the PwD community to strengthen. The benefit of this is that it lets PwD not only advocate for themselves but also to advocate for other people in their community so they might not have to go through the same prejudices.

To create this safe place for PwD it is imperative to promote representation and educate people about individuals with disabilities so that disabilities are normalized in the public eye. Increasing the population’s amount of interaction with PwD is not difficult and is much needed. The earlier this takes place, the better. If society’s youth is brought up surrounded by their peers with disabilities, it would allow both communities to learn a lot from each other. Teaching younger generations how to interact with PwD is a good place to start. Treating these lessons like any other instance where you would educate a younger person about manners and social cues can prevent a lot of uncomfortable situations for people with disabilities. It can also prevent harmful biases from growing in a young child’s mind since their exposure and prior knowledge makes them understand that individuals with disabilities are humans too.

Often times, disability policies have typically been developed for people with disabilities without their direct participation. An element to creating a better environment for people with disabilities is to ensure that they are active in all sectors of the economy. It is a great thing that most public areas are now required to be accessible to PwD. The use of ramps, elevators, sloping curbs, lifts for public transportation, and other methods are required by law to ensure that PwD can navigate through their everyday lives regardless of movement impairments. However, even though these fixtures for creating a more accessible space is mandated by the law, there are many instances where there is only one wheelchair accessible table at a restaurant, or a ramp inconveniently located at the backside of an establishment.  It is not only about making space accessible, it is also about how conveniently these resources are accessible to PwD. The reason that disability friendly spaces are sometimes difficult to come by is that people with disabilities are often not the ones designing these spaces. However, having a person with a disability as someone in charge or as a consultant for these issues can help the ball get rolling. So far society has expected people with disabilities to modify themselves to fit in, but having society bend the rules to accommodate people with disabilities can be beneficial to the growth of this community. Therefore, having people with disabilities in charge and active in leadership roles can spearhead this campaign.

Representation is incredibly important for people with disabilities. The marginalization and ostracism of people with disabilities severely hinder their representation in media and pop culture. People with disabilities are the largest minority group in the United States. Yet, the 2017-2018 GLAAD report (report that analyzes diversity in television) found that only 1.8% of characters have a disability making them the least represented minority group in the TV industry. Representation shows the disabled community that they are welcome and belong just as much as any other community.  Representation is not only about quantity, but also about being represented accurately without perpetuating any negative stereotypes. More often than not, people with disabilities are depicted in TV shows and movies as these characters that are trying to overcome their disability. It would be more appropriate to show these characters embracing themselves and having a purpose bigger than overcoming their disability. This supports the argument for having more individuals with disabilities as writers, directors, producers, or media consultants. When someone without a disability creates media from the perspective of an individual with a disability, they struggle to paint a truthful picture. This may cause someone without a disability to make assumptions and maintain stereotypes. Having better quality and quantity of disability representation will expose the population to more realistic experiences of individuals with disabilities. This can help generate truthful interchange between communities.

A simple change in the public’s perception of disabled individuals would go a long way in accomplishing the goal of increasing rights and opportunities for PwD. If people can see past the disabilities and focus on the person, then most of the discrimination, awkward moments, and harmful stereotypes facing the disabled community can be resolved. Both communities advocating for change will allow greater access and accommodations for disabled individuals to pursue higher education, enter the workforce, and engage in public events and venues. People need to learn how to respect the rights of these individuals and help them when needed. It is essential to campaign and use powerful narratives to enact greater protections and rights to this community of people. Effectively normalizing disability by tackling these issues head-on can lead to widespread positive changes.

 

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