Month: February 2019

Health & the Black Body

A black woman expresses surprise
Pop Art Explanation Explain by JanBaby, Creative Commons

Introduction

The field of medical anthropology is charged with exploring how cultures determine health outcomes and how health determines culture within a given population.  Culture is here defined here as the continuous process by which humans create and communicate shared values, customs, and knowledge within a society; health is here defined as the state and process by which an individual promotes well-being and quality of life.  Medical anthropology is especially interested in marginalized populations, exploring how these groups both suffer from health disparities and overcome these disparities through culturally-particular sources of resilience and strength.  At the core of medical anthropology’s exploration is the concept of our three ‘bodies’: (1) our physical body, i.e. the body of lived experiences; (2) our social body, i.e. how culture symbolizes and represents our personhood; and finally (3) our body politic, i.e. how our bodies are regulated, surveilled, and controlled over our lifetime (Scheper-Hughes & Lock, 1987). Individuals suffering from any form of violence (direct, indirect, and / or structural) typically suffer worse health outcomes, unless other protective factors (e.g. resilience, medical intervention) can transform this violence.

Of particular importance within the American ‘health culture’ is that of black bodies – how Americans of African descent suffer from higher rates of diseases, illnesses, and sicknesses than their counterparts from European descent.  This health-based intersection of nationality, ethnicity, and violence is not only a concern of medical anthropologists – many other academic disciplines are working hard to predict, control, and prevent health disparities within Americans of African descent.  For example, I currently manage a health and clinical psychology laboratory at UAB under the direction of UAB Psychology professor Dr. Bulent Turan.  Our lab explores the biopsychosocial burden of stigma on health outcomes in African American populations.  The question of how culture enacts stress, trauma, and negative health outcomes in minority populations, and how to prevent this from happening in the future, is a huge task – first undertaken by medical anthropology, now including diverse fields such as health psychology, public health, neuroscience, peace and conflict studies, and medical sociology.  In honor of Black History Month, this blog post explores how cultural prejudice and hate quietly kills Americans of African descent.

The Allostatic Model of Stress
The Allostatic Model of Stress, Author’s Collection

Allostasis and Structural Violence

One of the most prominent and empirically-validated theories to explore the relation between culture and health is that of allostasis, first proposed by Drs. Peter Sterling (a neuro-biologist) and Joseph Eyer (an epidemiologist) in 1988.  These scientists and their research team sought to explain how stressful life events impact an individual’s health, first drawing on Walter B. Cannon’s famous dictum of homeostasis– the idea that our bodies attempt to ‘correct’ itself in response a changing environment. Homeostasis explains why, when you step outside on a cold day, that your body begins to sweat to cool you down. However, Sterling and Eyer ran into an obstacle with homeostasis.  Individuals react widely differently to physiological stress, and Cannon was unable to explain why this might be the case.  Sterling and Eyer proposed that stress over the lifetime creates ‘wear and tear’ within our bodies – higher amounts of stress (for example, chronic stress resulting from racial discrimination) create a higher allostatic load(AL). High allostatic load, according to Sterling and Eyer’s research, results in symptoms including:

  1. High blood pressure / hypertension
  2. High levels of fatty deposits in our blood stream
  3. Blood clotting
  4. Atherosclerosis (hardening and narrowing of arteries)
  5. Suppression of our immune response system
  6. High demands of oxygen by our heart
  7. Having a stroke
  8. Congestive heart failure / heart attack

Allostatic theory (and subsequent empirical support) is quick to add that not all stress is damaging to an individual – eustressoccurs when challenging life events actually make us stronger (for example, the stress your body endures during a challenging workout at the gym).  However, chronic and unpredictable stressors are embodied and produce the aforementioned health concerns (this kind of stress is called distress).  Therefore, it may be assumed that individuals at a high risk of distress over the lifetime are placed at high risk for negative health outcomes, ranging from momentary physiological arousal to premature death.

A primary driver of chronic, unpredictable distress is structural violence, defined by Galtung (1969) as cultural inequalities (especially lack of access to power) preventing individuals from reaching their full potential. Structural violence is often difficult to pinpoint because there is no one culprit – no one person is responsible for unequal access to healthcare for Americans of African descent; our social system itself is configured to place minorities at a greater risk for distress and lower health outcomes.  Farmer (2004) correctly locates several insidious causes for structural violence across cultures, citing historical factors, political forces, latent racism and other forms of unconscious bias, and economic orders as a few examples.

To summarize, here are the takeaways of the complex relation between allostatic theory and structural violence:

  • Vulnerable populations have unequal access to power within a society.
  • These populations experience distress due to this unequal access.
  • Chronic distress manifests in the physical bodies of these populations, leading to high allostatic load.
  • High allostatic load results in health disparities.
  • These health disparities go unaddressed due to unequal access.

While indeed tautological, this feedback loop illuminates the vicious cycle many Americans of African descent embody – bodies unjustly assailed and structures unfairly positioned.

A conceptual map, noting five impacts on human health: individual behavior, social circumstances, genetics and biology, medical care, and physical environment
Social Determinants of Health Map by Jsonin, Creative Commons

Black Bodies & Intervention

As previously mentioned, many medical anthropologists conceive of three ‘bodies’ of health: physical, social, and political. The relative health of these bodies acts on one another; it is therefore paramount to address health promotion in a holistic fashion – not only ‘curing the disease’ but also disarming cultural forces that predisposed disease in the first place.  Below, I organize threats to and interventions for health in Americans of African descent, according to their physical, social, and political bodies.

Physical

Physical bodies are the stuff of muscles, of skin, of blood.  For Americans of African descent, population-level physical health and wellbeing is simply incomparable to Americans of European descent in major ways, including: higher rates of diabetes; of hypertension; of coronary heart disease; of cardiovascular disease; of prostate, lung, and breast cancer; and of asthma-related death.  Furthermore, American adolescents of African descent suffer disproportionally from sexually transmitted infections.  The infant mortality rate of these Americans is approximately three times higher than infants born to American mothers of European descent.  Geronimus, Hicken, Keene, and Bound (2006) demonstrated Americans of African descent experience higher allostatic load than other Americans, controlling for demographic variables, such as education and poverty levels.

According to a systematic review by Crook et al. (2009), there are a few promising avenues for intervention to address physical health in Americans of African descent.  These include placing health centers within communities of marginalized populations, using trained volunteer community health workers, and hiring nurses from within the communities of these populations.  Additionally, ‘traditional’ healthcare settings (i.e. hospitals) are not necessary to delivery physical health interventions; these interventions can be administered in community centers.  Of critical importance here is self-representation – members of marginalized communities empathize with and deliver quality care to members of other marginalized communities.

Social

Our social bodies are reflective of cultural norms, symbols, and values.  This body may be conceived of as psychosocial experiences. Our social body is maintained by the attitudes other people have about us.  In the case of Americans from African descent, bias, prejudice, and discrimination oftentimes characterize their social body.  Clinical-community psychologist Dr. Lyubansky of the University of Illinois at Urbana-Champaign, is quick to assert that this phenomena looks like “racism not always by racists”.  In line with allostatic theory, chronic and unpredictable experiences with bias and discrimination induces stress; which, again, causes stress and disease.

Dr. Janice Gassam, applied organizational psychologist, draws on scientific and popular literature relating to social stigma and discrimination and recently published a short guide to disarming unconscious bias.  First, we must be aware of our biases; one way to do this is by taking Harvard’s Implicit Association Test.  Next, members of majority or privileged populations must make a long-term commitment to reducing bias; this phenomenon will not happen overnight.  Next, specific behaviors related to bias must be neutralized; this includes unfair hiring practices and medical maltreatment.  Finally, Dr. Gassam asserts that teamwork with members of minority populations can fundamentally disarm cultural bias – evidenced by Edward B. Tichener’s and others’ research on the Mere Exposure Effect.

Political

Finally, the body politic refers to the relation of an individual and her or his political milieu, specifically how the human body is a political tool.  The relation is bidirectional as it relates to health and medicine: bodies are both governed by political decisions while also exerting power over the political process. Some bodies (and their corresponding health or otherwise) are prioritized within a political system; other bodies are ignored or violated.  A striking example of the violation of political bodies in American culture is voter suppression; we may look to the recent Georgia gubernatorial election and the myriad audacious tactics to keep Americans of African descent out of the voting booth.  If individuals cannot vote for policies that may benefit their physical and social health, these individuals do not have political health.

Within the context of the United States of America, voting behavior is the primary way disenfranchised individuals exert political control; it is therefore paramount to empower minority voters so these individuals may elect leaders dedicated to championing causes related to health promotion within marginalized communities.  The think-tank Center for American Progress offers five ways to protect the votes of Americans of African descent: (1) eliminate strict voter ID laws; (2) prevent unnecessary poll closures; (3) prohibit harmful voter purges; (4) prioritize African American voters in political outreach; and especially (5) recruit African American candidates for political office.  Marginalized Americans must be able to vote for policies and representatives that can break the health disparity cycle.

Conclusion

Observing, predicting, preventing, and controlling health disparities within marginalized populations is an immensely complex issue. As stated in the beginning of this post, medical anthropologists take a cultural standpoint to examine these issues; one prominent theory in this discipline is the systematic examination of ‘bodies’ – how these bodies are affected by health and disease alike. Other fields, such as health psychology, take a more empirical approach – locating specific points of intervention within an individual’s biopsychosocial health processes.  This post combines these approaches, explaining how health deficits arise within the communities of Americans of African descent, utilizing allostatic theory and structural violence.  To reduce these health disparities, chronic stressors and structural barriers plaguing these communities must be transformed.  This transformation begins by accepting a simple fact about black health: the stress from hate can kill you.

References

Crook, E. D., Bryan, N. B., Hanks, R., Slagle, M. L., Morris, C. G., Ross, M. C., Torres, H. M., Williams, R. C., Voelkel, C., Walker, S. & Arrieta, M. I. (2009). A review of interventions to reduce disparities in cardiovascular disease in African Americans. Ethnicity & Disease, 19(2), 204-208.

Farmer, P. (2004). An anthropology of structural violence. Current Anthropology, 45(3), 305-325.

Galtung, H. (1969). Violence, peace, and peace research. Journal of Peace Research, 6(3), 167-191.

Geronimus, A. T., Hicken, M., Keene, D. & Bound, J. (2006). “Weathering” and age patterns of allostatic load scores among black and whites in the United States.American Journal of Public Health, 96(5), 826-833.

Scheper-Hughes, N. & Lock, M. M. (1987). The mindful body: A prolegomenon to future work in medical anthropology. Medical Anthropology Quarterly, 1(1), 6-41.

Sterling, P. & Eyer, J. (1988). “Allostasis: A new paradigm to explain arousal pathology” in S. Fisher and J. Reason (Eds.) Handbook of Life Stress, Cognition and Health. Hoboken, NJ: John Wiley & Sons.

Policing Our Imagination

a Black Lives Matter sign
Ferguson Solidarity Washington Ethical Society. Source: Johnny Silvercloud, Creative Commons

On Thanksgiving evening, while many of us were still enjoying or recovering from a day of family and feasting, Emantic Bradford Senior – who is currently battling cancer – was waiting for his son EJ to come help him with his chemo medicine. “He was my best friend,” Senior says, “and my nurse. He treated me like I was his kid.” As EJ got ready to leave his father’s house that night, Senior, as he always did, asked his son if he needed any money. EJ was on his way to join eager Black Friday shoppers at the Galleria in Hoover. Late that night, Senior’s stepson woke him up. “You talked to EJ?” he asked. “Not since he left the house,” Senior responded, rousing himself. He showed Senior his phone, opened to a video posted on Facebook depicting a chaotic scene at the Galleria, shoppers running and screaming in panic. At this point, the Hoover Police Department had released a statement that there had been an altercation at the shopping mall around 10:00 PM and that police had shot and killed the instigator as he fled the scene. We’re “very, very proud” of the response of our officers, the statement said, for “engaging the subject and taking out the threat.” It was 12:30 AM. Emantic Bradford Junior – EJ – had been dead for two and a half hours at this point, but this would not be confirmed to the family until the next morning. Seeing the social media reports, Senior immediately called the Hoover PD to ask if the police had killed his son. “We’ll call you back in 10 minutes,” they told him. Ten minutes went by, no phone call. Senior called back. Again, “Someone will have to call you back.” This went on for a while until Senior finally demanded to know if that was his son – lying lifeless and uncovered on the cold, white floor – in the photos on Facebook. “I’m sorry, sir, I can’t give you any information at this time. You’ll have to call the county.” In frustration and terror, Senior calls the county police – he is put on hold, transferred, put on hold again, until finally a man gets on the line and confirms that yes, EJ is dead. Several hours go by, and the Hoover PD releases another statement: we got the wrong guy. 

EJ had been shot and killed by a police officer who wrongfully assumed that he was the person instigating violence at the mall that night. In the precious hours between the police department applauding the officer’s “heroic” actions for stopping a violent crime and admitting that EJ “very likely wasn’t the shooter,” EJ’s image was misconstrued and misrepresented in the news and on social media – at first, to fit the profile of a killer, and later, as someone who made some bad choices that resulted in his untimely death. There was a desperation to prove that this situation was different, that it was an isolated incident, and that it did not serve as an example of police brutality against people of color. A narrative about EJ’s life and the circumstances of his death was planted, one that justified the officer’s actions and placed the blame on EJ himself. And this is where we end up:

EJ had a gun.

Right…and Trayvon Martin was wearing a hoodie. Eric Garner was hustling cigarettes. How could we know that Tamir Rice was holding a plastic toy and not a real gun? And maybe the most egregious justification of all: Michael Brown “looked like a demon.” There is always some way to extract the wrongful killing of a black man by police officers from the systemic problem of police brutality. There is always something we can point to and say well, this had nothing to do with skin color and everything to do with…fill-in-the-blank. 

But let’s be clear: EJ wasn’t shot because he was carrying a gun (which he was licensed to own and trained to use). EJ was not perceived as a “good guy with a gun.” EJ didn’t brandish a weapon in the sense of acting threateningly with it. He didn’t have to – he was the weapon. And the words of Claudia Rankine ring in our ears:

“Because white men can’t

Police their imagination

Black men are dying”

The unnamed officer didn’t regard EJ as a person in that moment but as a black man with a gun, which in his imagination and under Alabama law, justified three shots to the back, ending EJ’s life. But we can’t help but wonder – to appropriate Matthew McConaughey’s powerful line in A Time to Kill – what would have happened if EJ were white. Even mass shooters – who are nearly always white – are often apprehended by police officers without being harmed. When they do die, it’s usually because they take their own lives. For example, after he opened fire on unsuspecting worshipers at the Emanuel AME Church in Charleston, police chased Dylan Roof through two states before they caught him and took him to Burger King to get something to eat. Travis Reinking had a history of mental illness, had threatened violence multiple times, his many firearms had been confiscated – and then returned – before he walked into a Waffle House and shot four people. “He just didn’t seem like a violent person,” one coworker said of Reinking, joining with others who insisted that he was “intelligent and polite.” Reinking fled the scene, and officers chased him into the woods before he was apprehended unharmed. At a movie theater in Aurora, police mistook James Eagen Holmes for a fellow officer because of “the tactical clothing he was wearing.” In other words, he looked like them. But one look at EJ Bradford, and that was it. A black man holding a gun, standing near the victim…bang, bang, bang.  

I imagine that police officer didn’t walk into that shopping mall that night intending to kill a black man. The nature of the situation forced him to make a snap judgement, and according to the official report, it took about three seconds to assess the situation, identify EJ as the target, and take him out. And it wasn’t until his family started demanding answers that they even questioned whether or not they had gotten the right guy. Ultimately, it was concluded that the officer “reasonably exercised his official powers, duties, or functions” when he fired those shots. And in a legal sense, it’s hard to argue with that. But we need some context here – there is a larger problem that must be addressed.

a cardboard sign that reads "We're not anti-police, we're anti-police brutality"
We’re Not Anti-Police, We’re Anti-Police Brutality. Source: Jagz Mario, Creative Commons

The lives of black people in the United States have been and continue to be conditioned and defined by violence – structural, institutionalized, everyday violence and brutal retaliation by the state and other groups against their demands to be seen and heard and regarded as human. Black bodies are weaponized in the popular imagination, associated with crime and danger, and the full participation of black people in society is subjugated by a collective consciousness that centralizes whiteness and systematically excludes people of color. The truth is that compared to white people, people of color are disproportionately killed by police officers in the United States. This is not because all white police officers are explicitly racist but because of where we hold space for black bodies in our broader cultural ethos. What gives police brutality its life force is the same thing that makes it harder for black people to buy houses, get into college and acquire health insurance. This refined yet insidious form of racism resides deep in our collective consciousness, and it engenders the unspoken but deeply felt sentiment that non-whites are threatening and dangerous, that we need the state to protect us from them. 

And where does this come from? When slavery ended, the South (and eventually the rest of the country) adopted slightly more palatable systems of subjugation and discrimination against the newly freed citizenship. The preservation of the white male patriarchy depended on one thing – fear. As long as white people continued to be terrified of black people, white supremacy reigned unimpeded. Over time, laws ensuring civil rights and protections for people of color were slowly updated and selectively enforced. To be sure, these were victories. Progress, however, is not a zero-sum game. As overt ideals and expressions of racism were put asunder on paper, they didn’t go away. Instead, they burrowed down deep inside of our subconscious. On the surface, we developed new ways of explaining the unequal distribution of resources and power and opportunity without ever outwardly implicating skin pigmentation. We relegated black people to conditions of poverty, denied all but a few access to the middle class, and then blamed those left behind for bringing about their own woes. We associated violence in black communities not with poverty and lack of access but with blackness itself. We moved black bodies from the plantation to the prison system, once again denying them their freedom, but this time blaming them for it. Not all of them, of course, but enough to sustain the image and the fear.

Shop owners at the Galleria will tell you that there is a “black” side and a “white” side of the mall. Where do you think the police presence was concentrated that night? When it comes to spaces occupied by black bodies, the police force tends to emphasize the “force” over the policing. And yet…“You just don’t bring guns into a crowded mall,” the Hoover mayor admonished in his statement about the wrongful killing. How ironic. Okay, Mr. Mayor, tell that to the NRA. Better yet, if that’s such an obvious unspoken rule, try to make it a law in Alabama and see how far you get. At the very least, say what you mean: if you’re black, don’t carry a gun into a shopping mall. Because for people of color, certain constitutional rights must be qualified.

This is refined racism: when white people hear of the wrongful killing of a black man by police officers, we latch on to some element of the story that distracts us from the color of the victim’s skin and emphasizes some other factor that explains the officers’ actions. Rather than trying to understand what it means to be a black person in this country, to confront our own implicit biases and to acknowledge our complicity in upholding a racist social order, we look for something, anything, to assure ourselves that this was an isolated and unavoidable incident (at least on the part of the officer). In doing so, we sustain the devaluation of black bodies and black minds and justify the power of the state to marginalize people of color, to treat them as an inconvenience and to perceive them as a threat that needs to be neutralized by whatever means necessary. In situations like this, that is where our minds naturally go. We make our excuses, we qualify our apologies, we blame the victim. The story gets whitewashed. And just like that, Trayvon’s death, Philando Castille’s death, EJ’s death are their own faults.

So how do we change this reality? It is going to take more than providing courses to police officers on racial sensitivity and limiting the use of force. If we truly want to live in a world where the state treats people of all skin tones equally, white people must police their imaginations. We must actively work to decentralize whiteness, aggressively refute the narrative that people of color pose a threat to our society, and unequivocally demand that they be protected rather than forcibly policed. The political justice system won’t change until our collective consciousness changes, until we break ourselves of false equivalencies and false associations around blackness, until we recognize what the enduring legacy of slavery and centuries of subjugation and oppression have done to individuals and families and communities, until we give the black man a chance to be the good guy. We are all stakeholders in this process; if we’re going to move forward as a society, we have to do it together.

The Galleria reopened at six o’clock the next morning, as scheduled, because consumer capitalism can’t be bothered by the death of a black man. The Christmas shopping season went ahead full stride, while Emantic Bradford Senior was left to mourn the death of his son, to contend with his disease alone, to wallow in the pain of never again getting to hear his son call him ‘daddy.’ After two months of investigation, the Attorney General of Alabama ruled that the nameless officer who shot and killed EJ was “justified” in doing so. Under Alabama law, no crime was committed. But EJ’s mama, April Pipkins, leaves us with an important question: “If this happened to your child, would you still call it justice?”

The answer is no, you would call it murder. 

The Importance of Comfort Food

Good food. Source: Wikimedia Commons, Creative Commons

What is comfort food?

As the name suggests, comfort food is any type of food that brings the individual more contentment. They tend to be associated with nostalgia or something that is familiar that brings you comfort. This can occur with other things such as wearing your favorite pants, watching your favorite movie, or reading your favorite book. Engaging in an activity that you have good connotations with can reduce the negativity surrounding change. There is a level of stability that comes with familiar items. Regardless of what chaos happens in everyday life, you can always have that favorite item.

“Comfort foods get their power from our belief in them.”

Comfort food varies depending on the person and their preferences. A survey conducted by Brian Wansink and Cynthia Sangerman asked a population of 1,000 North Americans to choose their favorite comfort food. Generally speaking, the top choices included chips, ice cream, cookies, pizza, pasta, and burgers. However, when looking into gender, the results diverged. Females tended to pick ice cream, chocolate, and cookies. While males would pick ice cream, soup, pizza, and pasta.

As one news article from USA TODAY said, ‘Women like sugar, men like meat’.

Another interesting difference is that women tend to look to comfort food when they are feeling lonely or sad, whereas men seek comfort food as a reward. Women associate comfort food with negative emotions, while men associate it with positive emotions. A study conducted by McGill University found that individuals who have positive emotions in regards to comfort food were more likely to pick healthier options. A common misconception is that comfort foods are unhealthy, but that is not always the case. Instead, comfort food is solely based on what people find comforting.

Is there a benefit to comfort food?

A 2015 study at Sewanee found that comfort food was associated with close relationships. It reminds of us our “social ties” and helps us feel less lonely when we feel isolated. This happens when an individual connects a food item with a social gathering, their family, or people taking care of them. There is a strong association between scents and memories due to the olfactory bulb, which is a part of the limbic system that deals with memory and emotional experience. Thus, nostalgia can evoke a sense of belonging.

“The emotional benefits of comfort food are more likely to be experienced amongst those for whom consumption brings back positive associations of early social interaction”

Foods that are pleasant to taste can cause opiates to be released. Similarly, when eating sweet, high-calorie foods, opiates and serotonin are released. This can cause a mood elevation or prevent one’s mood from declining. Another example is when you drink black tea, it decreases the amount of cortisol which can reduce stress. A study conducted at the University of Minnesota had college students watch sad movie clips and then eat their favorite comfort food or just food they enjoyed. The results showed that regardless of what people had eaten, their mood improved. This study was repeated, but instead of having the second group eat something they enjoy, they did not eat anything; the results were the same. However, there were some limitations to this study. They only looked at people who watched sad movie clips, when in reality other things can cause a negative mood. Furthermore, researchers did not look at how people eat comfort foods, meaning that going to get the comfort food could have an effect. Either way, while we are not definitively sure of the psychological effects, there is a link between food and memory.

Influence of Comfort Food

Everyone needs to eat; it is a biological necessity. However, what people eat varies depending on certain aspects such as one’s location, culture, and religion. For example, African and Afro Caribbean groups usually eat more meats, whet, and rice, whereas eastern groups will consume more herbs and spices. Something as simple as smelling a freshly baked apple pie or turmeric and onions can cause you to reminisce about a certain memory surrounding the food. Food is an important part of culture. Traditional foods are passed down from generation to generation. Immigrants bring the food they eat with them wherever they go. The food becomes a symbol of their culture amidst the unfamiliarity of their new place. Ultimately, everyone has a right to their culture and their food.

People eating. Source: Flickr, Creative Commons

When people hear the term comfort food, their mind goes to unhealthy food that you eat when stressed or upset. An article by Triosi and Wright pointed out that people either define comfort food as lacking in nutritional value or a food that has meaning, whether it is traditional, familiar, or cultural. They too found that there is a tie between relationships and belongingness in regards to comfort food. The need to belong is so strong that people have associated foods as reminders of others, not necessarily on their mood. Furthermore, their findings also shed light on how comfort food can range in flavor and taste. Thus, the importance is based on what people perceive the food as, not what the food actually is. An interesting finding was that comfort food can reduce loneliness but for those who are securely attached, not for those who are insecurely attached. Additionally, people who are secure tend to eat more comfort food overall especially when feeling lonely.

Importance of Comfort Food

Comfort food isn’t just about eating something because you enjoy it. Instead, it is intertwined with other aspects of one’s life through emotions, memory, and culture. “Food can be nostalgic and provide important connections to our family or our nation.” When you move to a new country, everything is unfamiliar; however, through food have a way to preserve your culture and it can help provide a sense of familiarity. Food and culture “makes up an important part of who we are, how we connect, what we value, and how we express ourselves as human beings.

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.

 

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram!

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.

Book Review: Barracoon by Zora Neale Hurston

February is Black History Month. For the next few posts, I will review books by Black women who provide insight into the Black experience.

a photo of the book Barracoon by Zora Neale Hurston
Source: Ajanet Rountree

Zora Neale Hurston (ZNH) was a cultural anthropologist. With her very being, Hurston occupied a space of protest of the normative within the field of anthropology as she traversed through society and academia as a Black woman from the South. The intersectionality of her life may remain lost on some; however, it is essential to understanding her as an ethnographer, folklorist, and local colorist. She studied under Franz Boas alongside Ruth Benedict and Margaret Mead, but there is often an exclusion of her work. When listing the cohort of the generations of anthropologists or ethnographers, ZNH is often not among those listed, as the categories for her work are The Harlem Renaissance, folklore, or African American literature. To Boas, ZNH was an anthropologist who, through the application of anthropological methods and techniques, gave insight into Black life in a way no White person could do. In this way, she achieves “racial vindication” and qualitative results through the application of anthropological methods like observation and participation, unstructured interviews, and ethnographic data collection.

Barracoon is the oral history of Cudjo Lewis—or Oluale Kossola–the only living African “cargo” of the slave ship, Clotilda. Kossola was not born into enslavement. He was sold and captured from Dahomey (presently Benin) and brought to Mobile Bay in Alabama. His testimony offers a completely new perspective and firsthand account of colonization. Hurston first reveals insight into her reflexive research on Kossola’s life and story in her autobiography, Dust Tracks on a Road. “One thing impressed me strongly…The white people had held my people in slavery here in America. But the inescapable fact that stuck in my craw, was: my people had sold me and the white people bought me. That did away with the folklore I had been brought up on. It was a sobering thought” (164-8). Employing her trademark of writing phonetically, ZNH allows Kossola to tell his story in his language and style, rarely interrupting his stream of consciousness. This methodology would later become known as emic ethnography. Spending three months in one-on-one interviews solely with Kossola, a Yoruba by birth and a resident of Affriky town, she learns about his life in Africa, his survival of the Middle Passage and enslavement, and his life as a ‘free’ man.

Oluale Kossola was a man to many, but to others, he was an exploit of their contrabanded flesh: “’the black ivory,’ ‘the coin of Africa,’ had no market value.” He and the other enslaved were “Africa’s ambassadors to the New World,” sold as “brisk trade” by the King of Dahomey (5-9). Although she refers to him by his American name, Cudjo, throughout the book, ZNH makes a point to state that upon her initial reunification with him, “I hailed him by his African name as I walked up to the steps of his porch.” As his eyes filled with joyful tears, he exclaimed,

“Oh Lor’, I know it you call my name. Nobody don’t callee me my name from cross de water but you. You always callee me Kossula, jus’ lak I in de Affica soil” (17).

By the time ZNH sits down with Cudjo, he is the only one left and finds himself surprised and moved that someone would want to learn about his life. Hurston writes that she told him that she wanted to know all about him, to which he responded:

“Thankee Jesus! Somebody come ast about Cudjo! I want tellee somebody who I is, so maybe dey go in the Afficky soil some day and callee my name and somebody dere say, ‘Yeah, I know Kossula.’ I want you everywhere you go to tell everybody whut Cudjo say, and how come I in Americky soil since de 1859 and never see my people no mo’. I can’t talkee plain, you unnerstand me, but I calls it word by word for you so it won’t be too crooked for you. My name, is not Cudjo Lewis. It Kossula. When I gittee in Americky soil, Mr. Jim Meaher he try callee my name, but it too long, you unnerstand me, so I say, ‘Well, I yo’ property?’ He say, ‘Yeah.’ Den I say, ‘You callee me Cudjo. Dat do.’ But in Affricky soil my mama she name me Kossula” (19-20).

a photo of a barracoon
barracoon. Source: Creative Commons

Kossola’s narrative differs from the account of Olaudah Equiano and the former slave narratives of Frederick Douglass, Harriet Jacobs, and Booker T. Washington. Additionally, it is unlike the ethnographic work of Eatonville, Florida as written about in Mules and Men and her most famous novel, Their Eyes Were Watching God. Scholars Natalie S. Robertson and Sylviane A. Diouf provide extensive supportive evidence about the 1927-28 anthropological research of ZNH, the Clotilda and the establishment of Africa town in Alabama in their respective books, The Slave Ship Clotilda and the Making of AfricaTown, USA and Dreams of Africa in Alabama. Although both books preceded Barracoon’s 2018 publication, they build upon the foundation laid and the way paved for by ZNH, even mentioning current residents of Africatown who met her during the visit. Robertson accurately identifies Kossula as a griot or native African storyteller, trusted to keep and share the stories of tribes over generations. There is “genius that is contained in oral tradition as chroniclers of phenomena and as vehicles for education in Africa…without dependency on written records. Because Cudjo hailed from West Africans who are masters of the spoken word, it was not difficult for him, even as a nonagenarian, to recall the circumstances that led to his capture and forced migration to Alabama” (9). As Diouf points out, slave and former slave narratives reveal what life was like during and after enslavement but the narrative of Clotilda survivors like Kossola “represents a unique group of people who grew up free, spent the majority of their years in bondage during the Civil War, and soon became free again.” Their perspectives also reveal the parts of African culture that adapted, sustained them and continued to unify them (4).

In her signature way, ZNH accomplishes several things with this book. First, she continually restores the humanity that enslavement and separation from Africa stripped away. With the one action of calling him by his African name, she imparted both his personal and cultural identity. By transcribing his narrative in his dialect, she maintains his character and dignity. Second, she allows Kossula to tell his story. Oral history and narrations are cultural and personal heritage. Kossula was the last survivor of the Clotilda; therefore, if ZNH had not traveled to Africatown when she did, this one-of-a-kind perspective might not have been told. Third, she does not gloss over or shy away from the brutality of colonization and the dehumanization that comes with the financial trading of human beings and comes to identify with him. As echoed in Dust Tracks, “Truth is a letter from courage” (31). Regardless of her role as an anthropologist and observer, she finds herself drawn in and experiencing his pain, tragedy, and joy. It is for these reasons that Boas concluded that the work of ZNH contributed to the “knowledge of the true inner life of the Negro” because she was not only a student of history but could “enter into the homely life of the southern Negro as one of them and was fully accepted” (xiii-xiv).

Hurston could have selected any group of people to study, anywhere in the U.S. or world, yet, she chose to return home and study the people she knew and the town she loved. In doing this, ZNH gave value and voice to the “inferior”—people who shared the same skin color and occupied the same category of within the social construction. She reflexively offers a distinct perspective on Blackness because she was Black and studied Black people to know herself more and to debunk the myths and stereotypes about who Black people were, how they arrived here, how they live and continue to live.

 

Additional resources include African American Pioneers in Anthropology and The History of White People

Disability Rights, Health, and Medicine

Disability Symbols. Wikipedia, Creative Commons.

What is a disability?

“A disability is a condition of the body or mind that makes it more difficult for the individual to do certain activities and interact with the world around them.”

Approximately one in five adults in the United States has some type of disability. There are numerous types of disabilities that impact people’s daily lives through sight, movement, learning, or communication, although there are many others. Furthermore, even if two people have the same disability that doesn’t mean they are impacted the same way. Thus, individuals who have a disability do not consist of one general population, but instead a diverse population with various needs. Now the focus is more on how the word disability refers to the three components mentioned in the next paragraph and how there are numerous factors that go into having a disability.

The World Health Organization created the International Classification of Functioning, Disability, and Health (ICF). The ICF introduces the word disability into three main categories that are impairment, activity limitation, and participation restrictions. The term disability and impairment do not mean the same thing. Before the 1970s, the common view was that a disability is measured by whether or not an individual has an impairment or a health condition. In the 1970s there was the disability rights movement, which geared people away from this medical view. However, many people still focus on the more traditional, medical model of disability.

Disability and Health

Those with disabilities tend to face health care disparities such as less access to adequate care, both in terms of promoting health and preventing diseases. Some people even go as far as labeling those with disabilities as a medically underserved population. There has been some research on how people with disabilities usually have a lower quality of health and are more likely to experience secondary conditions. Some examples of the health disparities include not having interpreters during medical examinations, adults with developmental disabilities being at risk for secondary conditions such as obesity, seizures, and cardiovascular disease, and women who have disabilities are less likely to get Pap tests and mammograms. Furthermore, some other issues include misconceptions and stigmas surrounding the word disability, shortage of suitable training, lack of proper medical equipment and facilities, lack of accessibility, and little to no individualized accommodations.

Disability Rights. Flickr: Féin, Creative Commons.

The Stigma

While there are medical advances over the years in regards to individuals with disabilities, there is a stigma surrounding people with disabilities. They tend to be seen as individuals incapable of making decisions or helpless. There are implicit or even unconscious biases against individuals who have a disability. Furthermore, there are several articles on how the medical community treats those with disabilities as having less value than non-disabled people. The medical interpretation of a disability is viewed as a pathological disorder and so this perspective focuses on how one can treat or cure it, rather than a social problem. In contrast to the medical model, there is the social model of disability, which focuses on how disability is formed from a social situation or construct, rather than a person’s characteristics. This viewpoint focuses on dividing impairment from disability, rather than recognizing that one is a component of the other.

The National Council on Disability says, “people with disabilities comprise the largest and most important health care consumer group in the United States, yet the Institute of Medicine and others have warned that Federal agencies, policymakers, and health care systems have not yet responded to the broad-ranging implications, for individuals, and for society, of the demographic increase in disability as the population ages.”

Health Insurance

Another barrier is that people with disabilities tend to lack health insurance or adequate coverage for healthcare. The National Council on Disability conducted research and found that few health care training programs address disability issues in their curriculum and most federally funded health disparities research do not look at people with a disability as a disparity population. Furthermore, while Medicaid and Medicare cover some people with disabilities, these programs do not cover those who have private insurance. Private group plan insurances are usually given through employers; however, not all employers offer health insurance and not all people who have disabilities are working. Those who have private group plans through their employer are required to cover basic care for the average working population. Medical equipment such as wheelchairs, ventilators, and crutches are limited in terms of annual payments.

Individual plans charge higher premiums to individuals with disabilities. Persons with emotional disabilities consist of those most uninsured, closely followed by persons with visual or hearing disabilities.

The three key elements of health care insurance are availability, affordability, and coverage for critical benefits. Important benefits can include long-term care, mental health, and medications. There have been national surveys that found people with disabilities have a hard time figuring out the insurance system, visiting specialists, and obtaining medical equipment that is durable. Additionally, numerous essential health care services can be out of their budget, meaning that they go without certain things because they simply cannot afford it.

According to the Journal of Disability Policy Studies, “estimates suggest that these factors obstruct or delay care for as many as 30 – 50 percent of adults with disabilities.”

The Henry J Kaiser Family Foundation conducted a national survey that found, “health insurance is inadequate for more than one in three people with disabilities who reported delaying care, skipping medication, or going without needed equipment because of cost.”

Accessibility

Accessibility can be broken down into many different components. The two main sections to focus on are communication and physical access.

Physical barriers are objects that are either natural or manmade that hinder or block mobility or access. These barriers can include inadequate transportation, accessibility to the facility and offices, and lack of accessible exams. Something as simple as getting a mammogram exam can provide numerous difficulties because the mammogram machine cannot adjust for height or health professionals are not adequately trained for lifting assistance. Thus, some health professionals conduct exams while patients are in their wheelchairs, which can yield inaccurate results. Other physical barriers include parking at the medical facility, entering the building, and the bathroom facilities, making it more difficult for someone with a disability to receive proper care.

Proper communication and education are required to make a change. Individuals with disabilities should feel they can discuss their challenges without fearing discrimination, while, those in the healthcare field should appropriately discuss, support, and address the challenges people with disabilities face. Research shows there is a lack of awareness and inadequate instruction among health care providers. For example in Connecticut, “91% of primary care physicians said they had no training in intellectual and developmental disabilities.” Without proper training, people tend to make assumptions about people with disabilities and often times they are incorrect. Some stereotypes include thinking that those with developmental disabilities cannot feel pain so they do not need anesthesia, people who are deaf have problems with their cognitive functioning because they are not fluent in standard English, or women who have disabilities do not need reproductive care because they are assumed to be sexually inactive. Making assumptions is not only harmful to the health of the patient but also it undermines who they are as a person. This can lead to damaging the patient-provider trust and provoke people with disabilities to not even bother to seek care. Ultimately, having access to appropriate health care can prevent new health conditions and could possibly stop current health conditions to worsen. In order to be effective and efficient, health care must be inclusive and accessible.

 

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.

 

Accessibility and Education

 

Parking spot reserved for people with disabilities
Wheelchair Only. Source: JoshuaDavisPhotography, Creative Commons

For most people, the importance of the right to an education is not unknown.  It’s through education that people gain the skills that they need to be active in their communities, join the workforce, and live their daily lives.  While there is certainly division in regard to people’s ideas of exactly how systems of education should work, there continues to be a shared understanding that these systems should exist in some capacity.  The importance of the right to an education for people with disabilities is not well known or, at least, not as actively recognized, but it should be.

Background of Disability Rights and Education in the U.S.

The Individuals with Disabilities Education Act (IDEA) took effect as the Education for all Handicapped Children Act of 1975.  It was meant to improve the access that children with disabilities have to “a free appropriate public education” and an environment that supports, rather than impedes, that education.  Part of IDEA is a requirement that public schools develop an Individualized Education Program (IEP) for each student with a disability who is enrolled.  IEPs are created and tailored specifically to the needs of each student, because even people who have been diagnosed with the same disability have differing experiences and face different circumstances.  These programs are reviewed every year by the student’s teacher, parent(s), the child themself and a qualified agency representative related to special education.  Other individuals can be brought in to review the program at the discretion of the parents or agency involved.

The Americans with Disabilities Act (ADA) was enacted in 1990 and prohibits “discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.”  Title II of the act requires state and local governments to make their services and resources equally available to people with disabilities.  According to Title II, there are architectural standards that suggest buildings should be accessible to all people.  Buildings constructed after the act passed are expected to meet these standards upon when they are built, while buildings that were constructed prior to the passing of the act are to be altered.  Since the services/resources of state and local governments include public educational institutions, these institutions are expected to meet these standards, which helps to make education more accessible.

Acknowledgement Is Not Enough

Despite the American legislation put in place to ensure educational equality for students with disabilities, there is still a lot of work to be done.  Laws have been created but are not always followed.

The Oregon Department of Education, for example, is being sued by Disability Rights Oregon (along with four other legal groups) due to its “lax oversight of special education programs . . . in small, rural communities.” Many schools in the state have been found to give students with learning or behavioral disabilities a shortened school day of only a few hours.  The schools have given a range of explanations for shortening student’s school days, from saying that they were responding to inappropriate behavior (some of which is related to the symptoms of the students’ disabilities) to teachers saying they had a feeling that “it was going to be a bad day.”  In many cases, the students would be able to get through a normal school day if they had the resources they need.  They simply have not been given the opportunity to try.  The lawyers involved in the lawsuit wrote, “Some children who are subjected to shortened school days due to their disability-related behaviors are eventually denied any instruction at all.”  This is a denial of their right to an education and it cannot continue.

The seclusion and unfair treatment of students with disabilities in the U.S. is not limited to Oregon.  According to the U.S. Department of Education Office for Civil Rights, more than 36,000 students were secluded during the 2015-2016 school year, and 66% of those students were students with disabilities, despite only making up 12% of all students enrolled.  Students with disabilities also make up 26% of those who received out of school suspension and 24% of those who were expelled.  Part of the problem is that the federal government does not currently have any actual regulations related to the seclusion of students with disabilities.  It merely suggests that seclusion be used if a student is a physical threat to themselves or others and that the seclusion should end when the student is no longer a threat.  Due to its impact on students’ access to their education, this issue needs to be dealt with as quickly as possible.

Library books. Source: CCAC North Library, Creative Commons

An International Problem

This problem can be found around the world.  In Nepal, for example, children with disabilities are far from having their educational needs properly met.  In 2011, Human Rights Watch (HRW) estimated that more than 207,000 of the country’s children have disabilities.  In 2016, 30.6% of children with disabilities were not attending school.  In some cases, the students with disabilities who are enrolled in school are kept in classes that are completely inappropriate for their age group.  According to HRW report on the situation, one sixteen-year-old named Amman was placed in Class 2, where his classmates were between the ages of seven and ten years-old.  His disabilities are physical, limiting his movement and speech but not his mental development.  The school has steps at its entrance with no ramp available, forcing Amman to crawl to his classroom.  He was not able to use the restroom during the six hours school was in session, so another student would have to go to his house and get his mother to come to the school and help.  Not only is this an immense barrier to Amman’s access to his education, but it also an utterly dehumanizing way to treat someone.

The country is not ignorant of the fact that people with disabilities have a right to an education.  In 2010, the country even ratified the United Nations’ (UN) Convention on the Rights of Persons with Disabilities, which aims to promote and improve the access to the rights of people with disabilities around the world.

Recent Developments

Though many problems still exist in the field of education for people with disabilities, progress is being made.  On January 17, 2019, the U.S. Department of Education announced plans to “work with schools to reduce incidents of improper restraint and seclusion of students with disabilities”.  They will use “compliance reviews” of school systems under suspicion of improper restraint and seclusion of students and “offer guidance on obligations under federal civil rights law.”  According to Elizabeth Hill, spokesperson for the Education Department, they plan to do more than 70 interviews each year.

Disability Rights Are Human Rights

In public conversations about human rights, people with disabilities are often left out or overlooked.  It is important that we intentionally work towards being more inclusive.

Article 24 of the UN Convention on the Rights of Persons with Disabilities (which the United States has still not ratified) focuses on the right to education.  According to the document, countries associated with the UN are expected to “ensure an inclusive education system at all levels and lifelong learning”.  This involves making sure that people with disabilities are not kept separate from the rest of the education system and receive the support they need.

In addition to acknowledging the right to education for people with disabilities, Article 24 includes an explanation of why education is incredibly vital, both in general and specifically in the lives of people with disabilities.  Education facilitates the development of one’s view of others and themselves, their personality, their creative talents, their mental and physical abilities, and their ability “to participate effectively in a free society.”  These developments shape the role that each individual plays in the world, making education an absolutely priceless and fundamental human right.

Resources at UAB

Students at the University of Alabama at Birmingham can contact the campus’s Disability Support Services (DSS) to request accommodations through their website or at 205-934-4205.  This process involves completing an online application, submitting documentation of their disability, and having an Accommodation Planning meeting.  Accommodations that are often used include reduced distraction testing, extended time on exams, note-taking services, assistive technology, and captionists/interpreters.

Keep up with the latest announcements related to the upcoming Symposium on Disability Rights by following the IHR on Facebook, Twitter, and Instagram.