Guardians: The Bridge between the Medical and Social Models of Disability

Getting fitted out for a better future Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and love Dari classes – he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life – he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. UK Dept of Intl Development
Omar (in the middle surrounded by his brother Rasekh, 10 and sister Majan, 8) was born with weak legs and hands since birth. They came to the Red Cross orthopedic clinic in Kabul with their father to get Omar fitted up for a wheelchair. Rasekh is in grade 4 and loves Dari classes, he would like to be an engineer. Omar will have to be pushed around for the rest of his life, but his siblings are happy to support him to have a normal life, he hopes to start school soon. Aid from the UK is supporting the International Committee of the Red Cross (ICRC) to run a network of seven orthopaedic centres across Afghanistan to assist those affected by mobility disabilities, including hundreds of mine victims. The UK is to help provide 3,800 new artificial limbs and 10,000 crutches for Afghan children and adults disabled during 30 years of conflict and extreme poverty. Source: UK Department of International Development, Creative Commons

I am currently binge-watching Law & Order: SVU. In one episode, “Competence,” the rape survivor has Downs Syndrome (DS). Her mother, who is also her legal guardian, feels DS limits her ability to function “normally” in the world. The main concern of the mother is her daughter’s ability to care for the baby she is carrying as a result of the repeated rapes. The mother’s protection of her daughter extended only as far as she could be with her. Throughout the show, the revelation is that the store owner, where the daughter worked part-time as a stocker, exploited her disadvantage for his advantage. To limit the risk of the baby having DS and added to her belief in her daughter’s inability to care for the baby, the mother arranged an abortion of her daughter’s behalf. The courts stepped in and conducted a competency trial. Placed on the stand, the pregnant rape survivor acknowledged that once she did set fire to the kitchen but that she could now make soup because her boyfriend showed her. She also explained that even though she did not know how to care for a baby yet, she could learn if someone taught her.

As persons with disabilities (PWDs) move from the medical model into the social model in pursuit of independence, often overlooked are the role and needs of the caregiver. Society must begin to acknowledge and identify the paradigm shift occurring across the board. The purpose of this blog is to reflect on the role of parents and caretakers (also referred to as guardians) who attempt to bridge the gap between the medical and social models of disability while encouraging self-determination and protecting their loved ones in a created world that does not have them in mind.

The societal solution to PWDs was eugenics, institutionalization, or isolation–out of sight and out of mind for centuries. The employment of this solution allowed and continues to allow some guardians to abuse the system and take advantage of those in their care, and the pursuit of swift legal action is necessary. However, as societies move towards inclusivity, we must give encouragement and praise to those who through their actions look for avenues and solutions that empower. More specifically, we must continue to champion the guardians. With the implementation of the CRPD, standards of ADA, more universal design efforts, and competency hearings, PWDs are becoming productive members within their communities. So, what does this mean for their guardians who have sacrificed to protect their family member from the cruelty of an able-bodied world and the able-bodied world not used to making allowances for Others, particularly PWDs?

Who is a guardian? Persons with intellectual disabilities often have a legal guardian. The legal guardian acts in the “best interest” of their ward or the person in their charge. Much of the present debate regarding guardianship is the abuse of power in the denial of civil and human rights. In a 2007 study, Dorothy Squatrito Millar found that study participants did not recognize the disconnection between self-determination and guardianship or realize that there are several available alternatives to guardianship. Despite the arrival at the age of majority (18), students with intellectual disabilities did not receive the opportunity to self-advocate; rather, in many instances, they are given directions on what to do, or their guardian did the task for them. The inability to self-advocate as an adult is a denial of personhood, a violation of dignity. “We are adults. They need to accept that” and “they need to put themselves in our shoes sometimes” were some of the responses of the students.

What is notable about the SVU competency hearing is the assumption that all adults know how to care for a baby or balance a checkbook. The implication is that a person with an intellectual disability needs to have a guardian to avoid making any mistakes. As one non-disabled parent in Millar’s study put it, “We all make mistakes, and we all need help sometime—but that doesn’t mean we need guardians.” Most guardians resist the transition to adulthood and self-determination out of fear of exploitation, lack of information, and concern for their disabled child’s well-being. Millar concludes that while there is a significant need for more research on the transition to adulthood, the inclusion of children with intellectual disabilities into decision making throughout their lives does assist in the collaboration between other institutions in providing care that aligns with goals, imparts knowledge, addresses concerns, and maintains dignity and personhood.

 

 

International Day of Persons with Disabilities 2018

Today, December 3, 2018, is the International Day of Persons with Disabilities (IDPD), an observance promoted by the United Nations (UN). This year’s theme, “Empowering persons with disabilities and ensuring inclusiveness and equality,” accommodates the 2030 Agenda for Sustainable Development’s pledge to “leave no one behind” which envisions sustainable urbanization, namely through a smart-city approach that prioritizes digitalization, clean energy, technologies, and service delivery. Such ambition is salient to persons with disabilities because, above all, achieving these goals will result in communities that are more accessible and inclusive for everyone.

It is argued the main contribution to why persons with disabilities have been excluded from public life is the practice of the medical model of disability (MMD) which embraces the perspective of non-disabled persons, reducing persons with disabilities to dysfunctional people in-need of medical treatment, with emphasis on normative functioning of the body. As a result, persons with disabilities are often assigned a sick role that exempts them from activities and expectations of productivity, leaving them as passive recipients of medical goods and services. These medicalized expectations of normality, restoration, and functional independence can devalue the lived experiences of persons with disabilities, thus inviting discrimination into their daily lives.

On the contrary, the social model of disability (SMD) challenges the knowledge/power differential employed by medical authorities and suggests empowerment for persons with disabilities, ultimately strengthening the patient role and influencing changes in treatment paradigms. Furthermore, the SMD argues that social practices are what disable persons with impairments, placing many persons with disabilities into isolating circumstances and preventing full civil participation. Whether it be employment in Alabama or being a refugee in Kenya, the SMD challenges the MMD by suggesting persons with disabilities are an oppressed group that experiences discrimination and deserving of equal treatment.

On December 13, 2006, the UN adopted the Convention on Rights of Persons with Disabilities (CRPD), an international agreement which details the rights of persons with disabilities and lists codes for implementation, suggesting both states and disabled people’s organizations (DPOs) are to coordinate to fulfill such rights. In the following years, nations spanning the globe have ratified the CRPD, such as Jordan (2008) and Ireland (2018), thus strengthening protections for persons with disabilities. Although the United States is one of the only nations to have yet ratified the CRPD, this international document is largely modeled after the Americans with Disabilities Act (ADA), signed in 1990, which prohibits discrimination toward persons with disabilities. As a result, we are only seeing the beginning of what is to come for accessibility and inclusion for persons with disabilities, both domestically and globally.

Disabled people celebrate the passage of The Rights of Persons with Disabilities Bill, 2016 by the Lok Sabha, in New Delhi. Source: Hindustan Times, Creative Commons

 

To commemorate IDPD 2018, the Institute for Human Rights is holding a blog series today that addresses access, inclusion, and representation for persons with disabilities, namely through the influence of media and power of politics.

“Let the shameful wall of exclusion finally come tumbling down.” – George H.W. Bush at the signing of the ADA

Sexual Assault on College Campuses

A woman who is talking to someone.
Beautiful woman. Source: Henry Söderlund, Creative Commons

According to the Centers for Disease Control and Prevention, one in three women and one in six men have experienced sexual violence .  The term sexual assault refers to “any type of sexual activity or contact that happens without your consent.”  Though, the most obvious examples of sexual assault are physical, such as rape and unwanted touching, it can also be found in verbal and visual forms, such as sexual harassment or exposing oneself.

Sexual assault is a particularly significant concern on colleges campuses.  It is experienced by one in five college women, and the majority of survivors are women between the ages of eighteen and twenty-four.  For men between 18 and 24 years old, being a student increases the likelihood that they will be assaulted by 78%  in comparison to those of the same age who are not students.  Due to the breadth of its impact, sexual assault on college campuses is an issue that urgently needs to be addressed.

Intersectionality and Sexual Assault

When discussing this problem, it is important that we recognize that not all groups experience sexual assault at the same rates.  The people who are most at risk are those from minority communities that typically have less social and political power than majority communities.

This is an intersectional issue.  Women of color, for example, experience sexual assault at higher rates than white women.  According to the Rape, Abuse, and Incest National Network, Native American women are twice as likely to experience sexual assault when compared to people of all other races.  People with disabilities are twice as likely to experience sexual assault  in comparison with people who do not have a disability.  Members of the LGBTQ+ community are also at a greater risk.  According to the 2015 U.S. Transgender Survey, 47% of transgender individuals are sexually assaulted at some point in their lives .

Title IX

Title IX is part of the Education Amendments of 1972 and prohibits discrimination based on sex in federally funded schools.  Colleges must have systems in place to deal with sexual assault, since it can have a serious impact on an individual’s educational experience.  They should investigate every reported incident and make any necessary accommodations to make sure that the education of assault survivors is negatively impacted as little as is possible.

Secretary of Education Betsy DeVos has proposed some changes for exactly how colleges are to handle reports of sexual assault, but, at the moment, students still have the rights set forth by Title IX and the Clery Act, which include the Campus Sexual Assault Victim’s Bill of Rights.  Under the Clery Act , survivors have “the right to receive written explanation of their rights and options,” and colleges must have “a policy on campus disciplinary proceedings” for sexual assault.  In these proceedings, both the survivor and the accused have the rights to equal opportunity to have each other present as witnesses, the accompaniment of an advisor of their choosing, and “simultaneous written notification” of any updates.

If you have experienced sexual assault on a college campus, you can report it to your school, get to know your Title IX coordinator  and school’s policies, and file a police report.

College students walking across campus.
College student. Source: Yuya Tamai, Creative Commons

Rape Culture

Exacerbating the problem of sexual assault on college campuses is the prevalence of rape culture.  Rape culture consists of the behaviors, language, and beliefs through which sexual violence is “normalized and excused.”  This can range from victim blaming, to the use of phrases like “boys will be boys,” to sexual assault itself.  This is especially impactful on the relationship between women/girls and sexual assault.  Rape culture leads to people asking female sexual assault survivors questions about what they were wearing and whether or not they were drinking, as if those factors are the reasons why people are attacked.  As girls grow up, they are taught what steps to take to help them stay safe.  The responsibility to prevent rape and assault is primarily placed on the people at risk of experiencing these things rather than being focused on teaching people not to be perpetrators.  Rape culture is a huge part of why many survivors do not report their assault .  Among survivors on college campuses, more than 90% do not report.

Rape culture is also perpetuated by phenomena such as toxic masculinity, which emphasizes the gender expectation for men to be aggressive and dominant.  Many people use this traditional view of what it means to be a man to minimize the significance of sexual assault to simply “men being men.”  This idea, as well as rape culture as a whole, frames sexual assault as something that is inevitable or a normal part of life rather than a serious problem that needs to be stopped.  This also leads to the assumption that men are always the perpetrators and survivors are always women, which is completely untrue.  Men and non-binary individuals can be assault survivors. Women and non-binary individuals can be assaulters.  People can be assaulted by someone of the same or a different gender.  Sexual assault does not always fit the stereotypes we have been taught.

Safety Precautions

If you are one of the many people who worries about their safety and about assault on a regular basis, here are some things you can do that will hopefully help you feel a bit more comfortable.  If you are not someone who feels the need to think about these kinds of things, this may be an opportunity to broaden your perspective and learn more about the things many of us have do to in order to feel even slightly safe.

  • Try to avoid walking out alone at night.
  • If you have to walk alone at night, consider calling someone and staying on the phone until you reach your destination.
  • Do your best to walk in and park your car in well-lit areas.
  • Carry pepper spray with you.
  • If you are out at night, try to make sure that someone knows where you are going to be and at what times.
  • Check the back seat of your car before getting in.
  • Make sure you have a reliable form of transportation if you are out at night.
  • Avoid jogging alone at night.
  • Always be aware of your surroundings, especially if you are alone.
  • Consider taking some classes in self-defense.
  • If you get a drink at a party or bar, watch them make the drink and do not leave it alone.
  • Consider downloading an app like Noonlight, which can make it easier to contact emergency services if you feel unsafe or if you are unsure if you should call 911.

Sexual Assault Is A Human Rights Issue

It is vital that throughout the conversation about sexual assault we recognize it is a human rights issue.  It is an issue of equality for people of all genders, sexualities, races, and abilities.  Article 26 of the Universal Declaration of Human Rights (UDHR) states, “higher education shall be equally accessible to all on the basis of merit,” but many college classes do not end until it is already dark outside.  Safety concerns prevent some people from taking these classes, while other people are able to take any of the available classes they want. According to Article 27 of the UDHR, “…everyone has the right to freely participate in the cultural life of the community,” but many cultural events, such as concerts and educational events, happen at night.  If someone fears going out that late and/or has no safe mode of transportation, how can they enjoy this right?  How can they use their right to freedom of expression if they are afraid (Article 19)?  How can someone live in an environment that supports their mental health and wellbeing if they are afraid (Article 25)?  How can they enjoy the equality that all people share if they are afraid?

Resources for Sexual Assault Survivors

The Last Straw: Ableism in Environmental Campaigns

Recent environmental campaigns have focused on the use of plastic straws as an easy way to eliminate/decrease plastic waste. Harmless in theory, this campaign is actually detrimental to a wide range of persons with disabilities. The mechanics of lifting one’s arm to drink is not universally able; many people with mobility impairment, chronic pain, or other issues are unable to drink without the aid of a straw. This issue extends to a variety of products and items that are labeled as “convenience items” for able-bodied people, but are critical to the health of persons with disabilities.  

Convenience items, for abled people, can include things like pre-chopped veggies in plastic cartons at the supermarket or disposable plates and cutlery. Baby wipes are another critical example; environmentally damaging (heard of fatbergs?) but can make an incredible difference in helping persons with disabilities have control over their own hygiene. One may respond to this by saying, “Why can’t they just take a shower?” Unfortunately, shower is not “just a shower” when you have one or more disabilities. It can be a dangerous, isolated environment – a race against your own body’s limits, where even if you win (i.e., don’t pass out, fall, or injure yourself), you still end up exhausted. Baby wipes, despite a terrible environmental impact, allow persons with disabilities to bypass that exhaustion and exert control over their own hygiene.  Essentially, convenience items are any item that saves time/energy at the expense of extra waste and often, a higher price tag. “Convenience” is a misleading term though, since these persons with disabilities depend on these products to function.

A concrete cylinder sits on the right of the shot, in front of ocean waves. The cylinder has "plastic kills! El plastico mata !"
“El Plastico Mata / Plastic Kills.” Source: Rasande Tyskar, Creative Commons.

Let me explain the dependent relationship between those products and persons with disabilities. For those of you familiar with spoon theory, just bear with me for a moment. Spoon theory is a metaphor for the difficulties of persons with disabilities, where spoons represent a unit of energy / ability to accomplish a task. The theory itself is credited to Christine Miserandino, a blogger with Lupus.  Able-bodied people, in this metaphor, have an indefinite amount of spoons, while persons with disabilities often wake up each morning with only a few, maybe a dozen. Every activity that seems mundane and forgettable (like putting on your clothes, taking a shower, driving to work) requires the use of a spoon. Persons with disabilities have to be careful and deliberate in every action to conserve spoons for the most important activities throughout the day — otherwise, we’ll be out of spoons before lunch, immobilized by exhaustion or pain.  

I say “we” because this issue has personal impact for me. I have Ehlers-Danlos Syndrome (as I’ve discussed in earlier blogs), which is a multi-systemic connective tissue disorder that causes chronic pain and joint instability among hundreds of other symptoms. Yes, hundreds! Cardiovascular, gastrointestinal, immune, respiratory, and nervous system dysfunctions galore. My WebMD history is the stuff of nightmares. It’s an invisible disability, which means that I often appear to be perfectly healthy — even though that couldn’t be further from the truth.

Due to my joint instability, I run the risk of painfully dislocating my shoulder every time I lift my arms. Lifting a heavy water bottle and tilting my head back can leave lingering nerve pain for weeks, depending on the severity of my condition that day. Chopping vegetables can make my hands, wrists and shoulders hurt for days, so pre-chopped packages of veggies save me at least one metaphorical spoon. Even getting a glass of water can be a labor-intensive process. If you have indefinite spoons, you may not even notice the effort involved. What feels like a quick trip to the kitchen for able-bodied people can be actually an arduous, multi-step experience. Standing, walking, lifting my arms, filling a cup with water, opening the freezer for ice — there are deliberate mechanics requiring strength and mobility that go into each of those tasks. Those mechanics are impossible for some and exhausting for many others.

 

“Sara and Nils Wedding Spoons.” Source: Marcus Metropolis, Creative Commons.

So grabbing a water bottle and a straw can save me the spoons that would be wasted in the process of making a glass of water. And no, I’m not exaggerating. Every single step is intentional for persons with disabilities, because our mobility is not a given. Our daily functioning is a result of years of grueling practice. We build routines that we depend on, filled with little things that are just “conveniences” to other people, but absolutely crucial for us.  I have said before that my body operates like a stick-shift vehicle, while most people have the convenience of having an automatic. Able-bodied people are so used to having an automatic that they assume it feels that way for everyone, but any action or movement requires conscious, concentrated effort for people like me who are the human equivalent to a 1971 Ford Pinto (exploding gas tank included).

With that in mind, it’s no wonder that persons with disabilities become so frustrated when their “convenience” items are attacked. With my environmentally conscious friends, I often feel alienated and shamed for my use of plastic bottles and straws. I wish I did not  depend on those items, but should people with disabilities have to choose between their immediate, personal health or contributing to global plastic waste?  The fact that we have to even make that choice is appalling. Persons with disabilities genuinely care about the environment but we have an obligation to ourselves as human beings to secure our personal wellbeing over anything else.

A man in dark clothing crosses a city street with the aid of a walking stick / mobility device of some sort.
“Streets for all.” Source: Mathias Ripp, Creative Commons.

What about alternatives to plastic? That’s a great question, but it comes with some complex answers. Biodegradable products are typically less accessible, more expensive, and rarely offer a genuine replacement for their plastic predecessor. Biodegradable baby wipes are difficult to find and can be seven times more expensive than regular baby wipes. After a quick search of popular shopping sites, I found that regular wipes costs about 1 cent per sheet, while the most popular biodegradable option costs 7 cents or more per sheet. Disability activist Penny Pepper points out the issues with biodegradable alternatives in an opinion editorial for the Guardian.

Take for example, paper straws. According to Pepper (who is a published author, punk-rocker, and wheelchair burlesque dancer), paper straws lack flexibility, which is critical to achieve a safe drinking angle. The angle of one’s straw is important when you are unable to hold a cup yourself, or need someone to hold it for you.  Metal and bamboo straws have the same issue, and are often too wide, which is not ideal for people with biting issues. Reusable straws run the risk of collecting bacteria, which is dangerous when autoimmune disorders are a factor. 

A homeless man with disabilities sits on the ground with his dog. His wheelchair is next to them, along with all his items and an American flag.
“Tommy & Scrappy, Jensen Bridge, Houston, Texas 1207021123BW.” Source: Patrick Feller, Creative Commons.

Even if all of those factors are somehow minimized, cost is still an issue. Most persons with disabilities are already at a disadvantage economically. “Research consistently finds that disabled people are less likely to be in employment than non-disabled people and when employed they receive, on average, lower pay” (Equality and Human Rights Commission). In the most recent annual compendium of national disability statistics, individuals with disabilities had a poverty rate of 26.7% – considerably higher than the national poverty rate of 11.6%. Not only that, but the cost of living with disabilities is substantially higher. Accessible housing is difficult to find. Medical expenses can be astronomical. Adequate health insurance can be hard to come by without a full-time job, and full-time jobs are often impossible for persons with disabilities. With all that in mind, persons with disabilities have little room to afford higher-priced products.

I have personally faced harsh disdain from environmental activists on the wastefulness of the above products. Yet, for people like me who depend on those products, it feels like a knife in the gut to be shamed for choosing your own health over environmental welfare. That knife twists when it is made apparent that the health of persons with disabilities comes second to the health of marine animals. I care about sea creatures just as much as the next person does – maybe even more – but hear me out: the rights of persons with disabilities should be prioritized over the rights of sea turtles.

A sign that says "Drowning in Plastic" is hung on a fence surrounded by a string of empty plastic water bottles.
“Marrakech Climate March.” Source: Takver, Creative Commons.

So how do we bridge this gap? How can persons with disabilities engage in environmental activism without compromising their own health? The burden is not on us. Rather, it falls on the leaders of environmental campaigns as well as product manufacturers. Persons with disabilities already do what they can with the products that are available to them, and daily life is enough of a struggle. Most of us actually want to be included in environmental causes, but it has to fit into our daily spoon allocation. The solution? Make environmentalism more accessible. Manufacturers create the problem with the mass production of environmentally damaging products; individuals and environmental NGOs shape the narrative, focus, and reaction. Both ends must commit to an inclusive paradigm shift.

Environmental NGOs and their leaders must do a better job at listening to persons with disabilities in order to create a more inclusive approach. The focus of environmental campaigns matter – instead of demonizing plastic straws, find another plastic product that is more universally able to boycott. Remember that consumer activism isn’t limited to boycotting; try buycotting instead, which encourages consumers to spend their dollars on a company that shares their concerns and values. If you have the financial flexibility, spend a few dollars more on a sustainable product over a cheaper, less responsible option. You can read more about strategies of political consumerism here in a journal article by Lisa Neilson.

Alternatively, encourage the innovation of products that persons with disabilities depend on. If you have the skill and ability to develop an environmentally conscious product to genuinely replace items like plastic straws and baby wipes, do it! We can’t just give up our dependence on those items, but most of us would gladly make a more environmentally responsible choice if it were both available and affordable. Ideally, the environmental movement will develop a commitment for inclusivity so that persons with disabilities can fully engage without compromising their integrity. After all, we want the world to be better, too. We need the world to consider the human dignity of persons with disabilities as a co-requisite for environmental justice.

The United Nations and Psychosocial Disabilities

Recently, members from UAB’s Institute for Human Rights (IHR), including myself, had the opportunity to visit the United Nations (UN) in New York City for the 11th Conference of States Parties (COSP) on the Convention on the Rights of Persons with Disabilities (CRPD). The CRPD is an agreement that details the rights of persons with disabilities (PWD) with a list of codes for implementation, where both states and disabled people’s organizations (DPOs) are suggested to coordinate to fulfill such rights. Currently, the CRPD has 177 ratifying parties, with the United States being one of the last to have not ratified it, although it was modeled after the Americans with Disabilities Act (ADA), the cornerstone for disability rights in the U.S.

I had the opportunity the serve as rapporteur for Round 3 of the General Debate, witnessing representatives address issues such as education and employment barriers for PWD in rural Afghanistan, India’s concern about the treatment of women and girls with disabilities, Malta’s 20 million Euro dedication to programs and organizations for PWD and Peace 3 Foundation describing how climate change disproportionately endangers PWD. Additionally, I attended many side events that covered topics such as the Voice of Specially Abled People (VOSAP) phone app, barriers to political participation in the Middle East and North Africa, and the first Regional Report of the Americas. The side events were less formal and engaging because the audience was welcomed to participate by sharing their thoughts and expertise, allowing coalition building to take place.

IHR at the 11th COSP to the CRPD. Source: UAB Institute for Human Rights

 

Amid this experience, there were a few important lessons learned. First, there is an enormous push for inclusive education, as opposed to special education, which values PWD’s contributions, equips them with essential skills and validates their societal presence. This approach would allow PWD, namely children, to learn and grow with their peers. Secondly, many nations are not responsibly addressing psychosocial disabilities which are clinical conditions/illnesses that affect one’s thoughts, judgments or emotions. Many countries have legislation that prevent people with an “unsound mind” from full participation in society, which doesn’t relate to one’s acts, but only their character. This stigmatizing approach effectively criminalizes their disability status, possibly resulting in forced institutionalization that separates them from loved ones and their community. Finally, there are countless people worldwide addressing disability rights. In the U.S., it seems disability rights are in the background, while other justice causes get most of the attention; however, I am confident that persistent coalition-building between justice organizations, especially in our impassioned political climate, will change this narrative, much like the collaborations built through the CRPD.

I want to use this blog as an opportunity to address an issue that has personal sentiments and speaks to my second point, stigma toward people with psychosocial disabilities (PWPD). Given my experience working in homeless shelters and having someone close to me who was institutionalized for their schizophrenia diagnosis, I believe there is a cultural disparity in how we talk about psychosocial disabilities because, on many occasions, they are addressed from a criminal and/or deviant lens, often devaluing the person(s) being addressed. According to the Mental Health and Human Rights Resolution of the Office of the United Nations High Commissioner for Human Rights, PWPD are defined as those, “…regardless of self-identification or diagnosis of a mental health condition, face restrictions in the exercise of their rights and barriers to participation on the basis of an actual or perceived impairment.” Psychosocial disabilities differ, meaning they are capable of being episodic, invisible and/or not clearly defined (e.g. depression, post-traumatic stress disorder and schizophrenia). Also, psychosocial disabilities are subjected to a medical narrative that arguably benefits mental health industries more than consumers.

Two years ago, during the 9th COSOP to the CRPD, Paul Deany (Disability Rights Fund Program Officer) claimed psychosocial disabilities are addressed in many countries through Western-influenced legislation that is separate from other disabilities, streamlining the establishment of psychiatric institutions that undermine fundamental issues for PWPD such as workforce participation, health care and political/rights. Therefore, we cannot view this concern as being exclusive to poor, underdeveloped nations because psychosocial disability stigma in rich, developed nations have fed this narrative and still have a prominent effect on PWPD. Although, to achieve collaborative global efforts that empower PWPD, supportive mental health policy must, first, be endorsed on the homefront. For example, political turmoil in the U.S. has contributed to recent events geared to strip health coverage from millions of vulnerable Americans. These efforts clearly demonstrate political incompetence of the mental health discussion at-large and confess to a larger narrative that admits power doesn’t always equate to knowledge and global leadership must be justified, not assumed.

Although many countries have enacted and enforced rights for PWPD, other countries are falling behind. For example, in Indonesia, roughly 18,000 people are forced into pasung, the practice of shackling or locking one in a confined space. Although pasung was banned by Indonesian authorities in 1977, families and healers continue to exercise this inhumane practice because they believe evil spirits or immoral behavior induce such disabilities. A similar practice in Ghana, at Nyakumasi Prayer Camp, was scrutinized last year, followed by the release of 16 people and the country’s Mental Health Authority claiming they would begin properly enforcing the shackling ban put into law in 2012. Such treatment of PWPD clearly impinges the Universal Declaration for Human Rights (UDHR), a watershed document for global peace, by violating commitments to end “cruel, inhuman or degrading treatment or punishment” (Article 5) and equal protection before the law without discrimination (Article 7).

To someone living in the modern U.S., such treatment seems unimaginable. However, past images of PWPD experiencing isolation and inhumane treatment inside the asylum walls are now echoed from a different, yet similar, perspective. During the mid-20th century, the U.S. underwent a period of deinstitutionalization which saw the closing of large state institutions that harbored PWPD. Largely due to the advent of the antipsychotic drug Thorazine, thousands of people were discharged from state mental hospitals and the shutting of such doors soon followed. However, the following decades have seen an influx of criminalizing PWPD, leading to their incarceration, where jails and prisons now serve as some of the nation’s largest de facto mental hospitals. This series of events, which moves PWPD from one total institution to another, undermines the liberation narrative of deinstitutionalization by continuing to segregate PWPD from their families and communities. As a result, this misfortune contributes to the current crisis that has seen the U.S. prison population increase by 408% between 1978 and 2014.

These appalling scenarios underscore a comment made by the representative of Kenya, during my visit to the UN, who insisted that policy cannot solely enforce human rights because programming must also be present to guide that path. Since 2007, Users and Survivors of Psychiatry in Kenya, a DPO, has not only influenced legislation that expands the rights of PWPD, but also organizes participatory public education programs through various media outlets, challenging stigma and misconceptions. On the other side of the Atlantic, in Connecticut, the Center for Prisoner Health and Human Rights works with local governments, universities and health systems to ensure recently incarcerated people access health care and insurance. Many of the individuals receiving such care access health-related goods and services to treat psychosocial disabilities that could’ve influenced or been a byproduct of their incarceration. Looking forward, this is the type of advocacy and programming that needs to be highlighted so it can be shown that good governance, particularly through the CRPD and ADA, is possible.

Old Habits Die Hard: The Self-Perpetuating Cycle of Ageism

Most of us have been told at some point to respect our elders. Opening doors, assisting in street transit, carrying groceries — all of these social niceties are expected to be paid specifically to older members of society. Respect for elders seems to occur universally as a cultural norm. Korean culture joyfully celebrates the one’s sixtieth birthday as the passage into old age, while honorific suffixes such as “-ji” in Hindi and “mzee” in Swahili indicate longstanding cultural respect for one’s elders. Some Ecuadorian cultures believe that their elder shamans, or mengatoi, become powerfully magical as they age (Jacobs). China even made it illegal to neglect one’s parents, outlining the legal duties of adult children to include frequent visitation and “occasional greetings” (Wong). Older people in America engage in vigorous self-advocacy, making the AARP one of the largest interest groups in the nation at nearly forty million members.

Happy Parishioners. Source: Joonas Tikkanen, Creative Commons.

So why then does society reflect the exact opposite of these norms? Old people are treated as feeble, unfortunate beings who are shown courtesy in public and yet face widespread discrimination. Both pernicious and insidious, ageism is defined as “the stereotyping and discrimination against individuals or groups on the basis of their age; [forms of ageism can include] prejudicial attitudes, discriminatory practices, or institutional policies and practices that perpetuate stereotypical beliefs” (World Health Organization). Ageism is an “ism” that is just as socially impactful as other forms of discrimination, yet the topic is rarely addressed and often disregarded. Despite lack of discursive engagement, ageism is a unique type of social discrimination in that it can transcend all other human identities. The process of aging affects every human being regardless of one’s sexuality, race, and political ideology. Most of us will eventually pass the cursed line that society demarcates between youth and old age and must suffer from the hostile, deeply discriminatory system that we ourselves once benefited from in our youth — and what a pervasive system it is. Surveys show that a whopping 80% of people over sixty have experienced some form of ageism (Dittman). Tad Friend supplies this neatly unpacked explanation in an article published by the New Yorker:

Like the racist and the sexist, the ageist rejects an Other based on a perceived difference. But ageism is singular, because it’s directed at a group that at one point wasn’t the Other—and at a group that the ageist will one day, if all goes well, join. The ageist thus insults his own future self.”

The Long Road. Source: Hansel and Regrettal, Creative Commons.

In just two years, it is predicted that more people will be over the age of sixty-five than under the age of five for the first time in Earth’s history (United States Census Bureau). In fact, according to the United Nations, the number of older persons is increasing more rapidly than other age group. This phenomenon is known as the “graying” of a population, and constitutes an urgent issue for affected countries. As people age, they become less able to physically care for themselves and usually exit the workforce at some point to retire for the latter part of their lives. As health conditions do generally worsen with age, the demand for medical and/or personal support services grows as older people continue to age and retire.

This becomes an issue when the size of a country’s workforce becomes insufficient to fill the demands of service-dependant older people. In nations with large workforces, the opposite issue — lack of opportunity for employment — still disproportionately harms older people. Many industries, particularly in America, push out older applicants and terminate veteran employees in favor of younger options. As industry culture has begun to tilt in favor of youth, older people have experienced a massive amount of workplace ageism. Nearly 65% of Americans between the ages of 45 and 60 had either seen or experienced age-based discrimination in the workplace (AARP). This may seem like a trivial issue, but unemployment is a dangerous state to endure at advanced ages. Worsening health conditions go hand in hand with both lower income and increased age; the combination of these factors can be fatal.

An elderly Sudanese womangets ready to receive her ration of emergency food aid.
Elderly Woman Receives Emergency Food Aid. Source: Tim McKulka/UN Photo, Creative Commons.

So why does ageism even exist? Princeton researchers found that most ageist arguments stem from issues with consumption (old people already consume too many scarce resources), identity (old people try to act younger than they are), or succession (old people had their turn, now they should move out of the workforce/society to make space for the new generation). All of these issues — consumption, identity, and succession — frame humanity in a way that associates one’s value with their usefulness to society. However, human beings should not be defined by their utility. Simply put, old people exist. They form one of the largest populations on the planet, and are rapidly growing. We cannot deny older people the dignity that we (supposedly) award to all else simply because they are perceived as “useless” to society. Human rights cannot and should not be applied conditionally.

This unfortunate phenomenon is surrounded by the related topic of disability. According to the 2016 Disability Statistics Annual Report, 35.4% of Americans over the age of 65 had a disability, which is over three times higher than the rate of working-age (18-64) Americans at 10.4%. Like advanced age, disability is also perceived as a barrier to social utility. Age and disability together form a potent one-two punch of compound discrimination, making older people with disabilities extremely vulnerable to abuse and exploitation.

An old woman sits at a window next to a yellow flower in a vase.
Untitled. Source: Bas Bogers, Creative Commons.

Elder abuse, as it is termed, is widespread but often under-reported. National rates are reported to be around 10%, though researchers at the prominent New York Elder Prevention Society found self-reported rates of elder abuse to be up to 24 times higher than the documented rate. Only 3% of  older people in New York officially reported any form of elder abuse, though nearly three-quarters self-reported that they have experienced neglect or financial, physical, sexual, and emotional abuse. This number may be inflated by the instances where individuals experience multiple types of abuse, making exact numbers more difficult to isolate. The most common forms of elder abuse are financial and physical/sexual abuse, which can occur concurrently.

Nursing homes, meant to protect and nurture their patients, are actually one of the most dangerous environments for vulnerable older persons with disabilities. The Nursing Home Abuse Center reports a nursing home abuse rate of about 44%, and a neglect rate of nearly 95%. Elder abusers are rarely prosecuted due to stigma, social isolation of the victim, lack of support services, inaccessible reporting, and proximity of abusers. Relatives constitute about 90% of elder abuse perpetrators, which often makes the victim reluctant to prosecute their own spouses, adult children, or other relatives.

Skin. Source: Victor Camilo, Creative Commons.

Direct abuse and neglect of the elderly is widely sustained by the deeply pervasive public attitude of hostility towards aging. Beauty products are regularly marketed as “anti-aging,” covering up the crows’ feet, varicose veins, liver spots and silver hairs that inevitably accompany a well-lived life. Most of the stigma is inevitably directed at aging women, as femininity carries the heavy burden of visual appeal. The cosmetic surgery industry is booming as women are pressured to appear as veritable supermodels long after the glow of youth has faded. Social media surrounds us with visuals of gorgeous, toned, smooth-skinned women who never seem to age a day, while the rest of us have to keep up with whatever products, surgeries or diets we can find.

Gone are the days where women past a certain age could relax into frumpy mom jeans and orthopedic tennis shoes without fearing judgment. Modern grandmothers now face the strenuous expectation to maintain a Helen Mirren-esque figure with the style and poise of Meryl Streep. Notably, these two women are some of the very few well-known older actresses; both have had to work tirelessly to achieve that notoriety, considering Streep’s record-breaking two-dozen Academy Award nominations and Mirren’s prestigious Triple Crown of Acting that has only ever been awarded to 23 people. It’s undeniable that Hollywood has a major problem with representation of women over thirty. Men in the acting industry get a few extra decades of “silver fox” stardom while women face rejection at first wrinkle.

An older couple links arms as they carry bags and walk together.
Lean on Me. Source: Amro, Creative Commons.

Ageism sometimes feels like an inescapable facet of society, but it shouldn’t have to be. Encouraging and celebrating old age will eventually serve to benefit everyone, as positive attitudes towards aging have been shown to increase lifespan by nearly eight years. Elderly people have had autonomy and dignity systematically stolen from them through attitudes of derision and pity– they are constantly viewed as either cantankerous burdens to society or doddering, wretched old fools.  One’s social contribution or lack thereof should not be a determinant in preserving human dignity. After all, human rights are for all humans, right?

From here, we have to do better on a global scale. Any success in reducing ageism requires confrontation of our own internal prejudices, since youth are the major perpetrators of age-based discrimination. The efforts we make today in reducing oppression for older individuals will directly impact our future experiences. Psychologists have found three major components essential to active engagement in fighting ageism:

  1. Social integration
    • Often, elderly individuals are unable to fully participate in society due to social hostility and lack of accessibility. Many of us have not been educated on topics relating to older people, and some even may find engaging with the elderly to feel uncomfortable. Fuller integration into society would foster respect for the aged community, as increased public presence of older individuals would promote culture of tolerance.
  2. Reduce cultural shame
    • Current media culture is incredibly toxic towards older people, and portrays the elderly in a negative light far too frequently. Advertisements should attempt to portray older people with respect to their human dignity, rather than the foolish, bumbling representations that are far too common in current media.
  3. Accept aging as a fact of life
    • Ageism often stems from personal fears of death and dying. This fear is incredibly common but damaging to both society at large and to individuals who hold them– ironically, negative attitudes towards aging have been shown to decrease lifespans. To combat this, old age should be normalized and celebrated.

Clearly, ageism is not something that can be eradicated at all once. It requires active change on both an institutional and personal level, as age-based discrimination is deeply ingrained in cultural attitudes and everyday interactions. Monumental as it may seem, ageism is still an issue that we must tackle if we ourselves are to experience old age with the dignity that all humans deserve. So remember to always respect your elders, whether out of regard for human dignity, self-preservation, or both.

Protests: Movement Towards Civil Rights

** The National Walkout Day last week and the upcoming March for Our Lives protests organized by the surviving students of the Parkland school shooting in February has prompted this blog repost from 2016. 

Signs carried by many marchers during March on Washington, 1963. Source: Library of Congress, Creative Commons.

 

Have you ever considered the pilgrims’ decision to leave England over religious freedoms, as a protest? Or slave rebellions as a protest to the dehumanizing treatment of being viewed as less than human or 3/5 of a person? Or the suffragettes dressed in white marching for the constitutional right to vote? Often most people point to protest images of the Civil Rights movement or Vietnam War as finite examples of protest, believing that protests are a thing of the past and no longer applicable in 2016. What I find fascinating is how quickly a protest is discounted as merely a group of unsatisfied people gathering together under a banner of their perceived oppression.

I use the phrase “perceived oppression” because it was used as a matter of fact, rather than projected opinion, by Facebook webstar Tomi Lahren in an interview two weeks ago. During a segment, Lahren assumed that Colin Kaepernick’s national anthem protest was rooted in his “perceived oppression” about how black people and people of color are treated in this country. Aside from The Daily Show audience, Tomi Lahren’s videos boast between 7-17 million views – an incredible feat for someone who doesn’t seem to understand the power of her platform. Lahren is entitled to her opinion. She is granted that right as a human being and a citizen of this country, as written in the first amendment. Additionally, Colin Kaepernick, Black Lives Matter, gay rights activists, and anti-abortionists do too. Here’s where I have issue: the lack of regard for fact and truth. So where does a disregard for truth and fact leave the minorities who are oppressed? They remain outcasts due to opinion rather finding allies through fact.

The fact is oppression is real.

It is not just an impact felt by American minorities; it is an international way of societal coexistence to which the natural response is protest and resistance. **For the sake of this blog, the term ‘minority’ means every group that is not a part of the majority, whether by race, gender, class, ethnicity, sexual orientation, and/or ability.

Many have concluded that the not-so-silent white majority came out in force in support of Trump over Clinton in this election. The narrative is that for the past 6-8 years, their voices had been silenced under a lack of jobs, healthcare, and education. In this election and with this new president, their voices are now being heard. Yet, what about the voices of the minority groups who have been asking for the same things for longer than 6-8 years… how about centuries? When and how will their voices be heard?

Most major languages have a word for violence; however, the idea of nonviolence is the combination of the words that mean ‘not violence’. The Sanskrit word, ahimsa, means ‘not doing harm’, and Mahatma Gandhi reiterated that ahimsa “does not mean meek submission to the will of the evildoer, but it means pitting one’s whole soul against the will of the tyrant.” Gandhi and Dr. Martin Luther King, Jr. are names synonymous to the principle and practice of nonviolent resistance.

Gandhi was the first to explore the expansion of nonviolence from an individual lifestyle into a concerted political and social justice strategy, believing that nonviolence was used with more frequency and brought about more success than violence. Dr. Erica Chenoweth and Maria Stephan analyzed 323 violent and nonviolent resistance movement from over 100 years, substantiating Gandhi’s claim: “nonviolent resistance campaigns were nearly twice as likely to achieve full or partial success as their violent counterparts.” Dr. Stephen Zunes concludes that nonviolent action, in the form of resistance, has been taking place as a part of political life for centuries. It is their success which has garnered attention as the cause of human rights has advanced as a direct result of “toppling or dramatically reforming repressive regimes.” Nonviolence protest is a deliberate tool for social change. It is not an ad hoc strategy. It is, rather, a methodical method of struggle which is no longer simply rooted in religious or ethical principles. Gene Sharp labels it as political defiance.

So what is protest?

Protest is a right. The first amendment of our Constitution grants all Americans the right to peaceful assembly and to express dissatisfaction to the government. Additionally, according to Article 20 of the Universal Declaration of Human Rights (UDHR), peaceful assembly has been declared a human right. The clarifying word is peaceful, or nonviolent, in both documents. It is imperative to understand that a riot is not a right.

Protest is different to riot. Dr. King emphasized that the riot is socially destructive and self-defeating but it is also the “language of the unheard,” thus the counteraction to a riot is to organize in nonviolent resistance based on the principle of love.

Kiev monk hearing confession during protest. Source: Jim Forest, Creative Commons.

 

Protest is not passive. Students in Serbia (Yugoslavia) organized a nonviolent resistance in cities around the country as a means of protesting the dictatorship of Slobodan Milosevic. They called themselves, Otpor!. By adapting Gene Sharp’s book as a manual, Otpor! positioned themselves under a threefold banner of unity, planning, and nonviolent discipline. The strategy was nonviolent resistance with concerts, sprayed painted slogans, and ridicule of the government, including a “birthday party for Milosevic”. The resistance which began as a student-led protest became a movement of more than 700,000, resulting in an overthrown government.

Protest is the struggle for recognition of an injustice. By honing in on societal structural violence, which is made manifest through cultural and social institutions, nonviolent protests are not about ‘attacking people’ as much as they are about calling attention to and addressing the “psychological, social, economic, and political weapons applied by the population and the institutions of the society”, believes Gene Sharp. In New York City 1985, at the height of the AIDS epidemic, the gay community and their heterosexual allies took to the streets in protest of governmental failure to fund and research a cure. At the time, millions of people worldwide had succumbed to AIDS-related illnesses. Activists under the banner of ACT UP and TAG sought to bring awareness and solution to governmental decision to penalize human beings for their lifestyle choice. Therefore, not only were they denied their constitutional right to protest but their human right to medical care which is included in the standard of living, identified in Article 25 of the Universal Declaration of Human Rights (UDHR).

The UDHR is the international standard for the treatment of human beings. The document sheds light on Dr. King’s pronouncement that “Justice is indivisible. Injustice anywhere is a threat to justice everywhere.” What interesting is that the Pledge of Allegiance and the Constitution of the United States of America both speak of liberty and justice is for all, and that all men are created equal. Equality is a misnomer for some citizens of this country and the world.

How does justice exist for all if you are the target of a hate crime or laws designed against you?

Gandhi said, “The first condition of nonviolence is justice all round in every department of life. Perhaps, it is too much to expect of human nature. I do not, however, think so. No one should dogmatize the capacity of human nature for degradation or exaltation.” To find justice all round in every department of life, a person must begin with self. Johann Gottlieb Fichte announced, “if you are to see differently, you must first of all become different.”

Source: Revolution Messaging, Creative Commons.

Protest is the courageous outward expression of inner dissatisfaction or disapproval. Angela Y. Davis asserts that the struggle is exemplified in protest. Grassroots nonviolent movements, or as Diana Francis refers to them as “people power” movements, have consistently challenged repressive and unjust systems for generations. So what can you do to join nonviolent resistance movements which seek to expose and eradicate structural violence directed at minorities in the form of oppression and repression? Adapt four characteristics of a nonviolent ethic as exemplified in Gandhi and King. The four characteristics of identity and ethics from the lives of Dr. King and Gandhi are a compassionate, cosmopolitan worldview, a truthful reality, an educated voice, and love. As students of their work and life, we can possess and impress these characteristics upon others, transforming the world through personal change in order to garner social change.

  • A compassionate, cosmopolitan worldview: The word cosmopolitan comes from the Greek words cosmo meaning world, as in universe not earth, and polis referring to the city that one owes loyalty. Voltaire says, “Cosmopolitans… regard all the peoples of the earth as so many branches of a single family, and the universe as a state, of which they, with innumerable other rational beings, are citizens, prompting together under the general laws of nature the perfection of the whole, while each in his own fashion is busy about his own well-being.” Therefore, the possession of a cosmopolitan worldview means we have placed ourselves under the loyalty of the world and the citizens who share this common space, with the added dimension of compassion.
  • A truthful reality: A truthful reality is not a denial of the past. It is the understanding that the past and those who endured it, are the launching pad for those of us living in the present. Davis states, “in the 1960s we confronted issues that should have been resolved in the 1860s. And I’m making this point because what happens when 2060 rolls around? Will people still be addressing these same issues? And I also think it’s important for us to think forward and imagine future history in a way that is not restrained by our own lifetimes.”
  • An educated voiceWilliam Ellery Channing concluded that “others are affected by what I am, and say, and do. And these others have also their sphere of influence. So that a single act of mine may spread in widening circles through a nation or humanity.” Everett Rogers studies the diffusion of innovations in societies. He has concluded that for an idea–whether true or false, good or bad—to become embedded in society, it only takes 5% of the population to believe it, and if 20% become aware of the idea, it becomes unstoppable. In Rwanda, the genocide of Tutsis by Hutus in April 1994, was because of untruths spewed from the radio.
  • Love: Dr. King professed that “love is the only creative, redemptive, transforming power in the universe.” The beauty of love is that you can love and disagree. Love is a choice. You choose to be ruled and guided by love, just as you choose to be ruled and guided by fact or opinion, or emotions and feelings.

Protest gives an AND rather than an OR.

 

“Wonder”: Bullying Redefined

a picture of boxing gloves
Boxing gloves. Source: Franz Kohler, Creative Commons

“Sticks and stones may break my bones but words will never hurt me.” Saying and repeating this mantra is a daily occurrence on some playgrounds and households. The harsh reality is words do hurt because the bruises and wounds they inflict remain in the core of the psyche and being. A video of Keaton Jones set the world of social media ablaze on his behalf late last year. Jones, a middle-schooler from Tennessee, tearfully retold his experience with bullies during the day. There is a temptation to turn Jones into a “poster child for inspiration porn”; thereby negating the reality that being different remains a negative within some societies, including America. Siblings bully each other by calling one another names, coworkers often haze the newbies, jocks put nerds in lockers, and presidential candidates mock journalists with disabilities. In other words, we are in the midst of a bullying epidemic.

Epidemic is generally used to describe the spread of an infectious disease, one that is seemingly out of control. Society fails to view the unintended consequences of words as part of an epidemic that spans the public and mental health sphere, and reaches into the realm of human rights. The ultimate issue with this bullying epidemic is that it infringes on the individual’s (or group’s) right to a peaceful environment. Humiliation and marginalization, fueled by a desire for control, are the ultimate effects projected onto countless targets. These effects, often times, cause targets to make irreversible and life changing decisions like 10-year-old Ashawnty Davis and 13-year-old Rosalie Avila who both committed suicide after copious amounts of schoolyard and online bullying they endured. Their deaths speak to a direct need for awareness and prevention tactics in the classroom, family, and society. The words bully and bullying have a stereotype and stigma that leads many individuals to make assumptions that seek to label the bully rather than their actual behavior. The misapplication of labels, placed on a bully, dehumanizes their personhood rather than their behavior. This blog examines the interplay between the assumptions and realities of the bullying persona.

R.J. Palacio wrote Wonder following an encounter with her child and another in an ice cream shop. Wonder tells the story of August “Auggie” Pullman, a 10-year old boy, who is blighted by a severe facial deformity. Because of his deformity, his peers and often times other adults are cruel to him. As Auggie starts middle school, his peers find his appearance off-putting so they choose to isolate him. The school culture created an environment where ostracism is the result of not fitting in. The bullying behavior begins with isolation and badmouthing by his peers. The story begins to take a turn when one of Auggie’s friends, Jack, is caught making fun of him. Jack so desperately wants to fit in that his lack of self-confidence influences his courage and willingness to defend Auggie when others are badmouthing him. Jack is a classic example of the bystander role. Many of us find ourselves witnessing a bullying situation and we, more than not, choose to ignore the situation or join in on the bullying. Jack’s betrayal of Auggie cuts so deeply that he holes himself up in the bathroom in tears.

Auggie’s reaction is common. Much like Keaton Jones, those on the other end of a bully’s action and/or words do not understand why others are so cruel. Ultimately, in the book, Jack and the others in Auggie’s grade realize that it is better to choose kindness. They rally around Auggie and accept him as one of their own. They see all of the values he possesses and admire him for his courage and perseverance. This story is an example of what bullying awareness can bring; unfortunately, bullying situations do not always end so positively.

a face that is angry
anger. Source: Shaun Chin, Creative Commons

Bullying is a multi-faceted phenomenon, influenced by many factors that not easily explained. It is a unique and complex form of interpersonal aggression. Aggression takes many forms and manifests in different patterns of relationships; it is a show of oppression in an attempt to gain power over another individual. Coincidentally, bullying behavior is not just the result of individual characteristics, but influenced by multiple relationships with peers, families, teachers, neighbors, and various other interactions with societal influences. It is important to note this distinction in order to equate a bully’s actions to be a result of their personal psychology and their interactions with the environment.

Bullying can be broken down into two categories. The first form of bullying occurs when the bully and their target are in the presence of one another. This is direct bullying and observable when a bully physically or verbally harasses their target directly. Spreading rumors is a method of indirect bullying because the aggressive behavior occurs ‘around’ the target. Under those two umbrella terms, there are four types of bullying: physical, verbal, relational, and damage to property. Physical bullying encompasses hitting, biting, kicking, or punching. Verbal bullying occurs when the bully chooses to use words to hurt and harass their targets. Relational bullying involves efforts to harm the reputation or relationships of the targeted targets. Lastly, damaging one’s property is its own form of bullying because it not only involves a target’s personhood, but their property as well.

Bullying can happen in any number of places, contexts, and locations. It is not isolated to the stereotypical shove in a locker or thrown in the trashcan after school. The more digitized society becomes, the more complex and viral the bullying. Electronic bullying, or cyberbullying, involves the oppression and assertion of power over an individual through social media and other digital outlets. Cyberbullying focuses on context or location versus an actual type of bullying because it happens over the internet. Although this form of bullying occurs through the internet, its consequences are just as detrimental to its targets. Depression, suicide, and anxiety are just a few ways that cyberbullying can affect its targets. School, the workplace, the mall, online, and the bar are all places where bullying can be perpetrated. In the case of Ashawnty Davis, the viral sharing of the altercation she experienced at school proved too much for her to overcome.

When thinking about bullying and its perpetrators, it is important to note that it is fluid in its nature and involvement. Studies show that frequent targets and frequent perpetrators assume different roles in bullying across school years as well as young adulthood. Thus, individuals can observe bullying, experience bullying, and perpetrate bullying across different situations over time. Across contexts, for instance, a student may be targeted by classmates at school but bully his or her siblings at home.

Jack, who starts as August’s friend, later finds himself in the position of a bully. He badmouths August in order to gain notoriety with his classmates. Eventually, his role shifts from being a bully and a bystander, to becoming an “upstander.” An upstander is a person who acts for positive change. Jack does this by sticking up for August when others attempt to bully him. However, by standing up for August, he finds himself now being bullied as well, thus falling into the targets role.

Research shows that being involved as both a perpetrator and targets seems to compound the impact of bullying. Bully-targets find themselves at greater risk for anxiety, depression, low self-esteem, self-harm, suicidal thoughts, suicide, substance abuse, and a host of other psychoanalytic disruptions. The misconception that bullies bully because they themselves have been targets is an overgeneralization to the psychoanalytic aspects at play when an individual sets out to bully someone else. We cannot simply equate their actions as retaliation.

What makes an individual more susceptible to becoming a bully? A variety of factors including the association with callous-unemotional traits like psychopathic tendencies, endorsement of masculine traits, conduct problems, and antisocial traits may contribute to exhibiting bullying behavior. In children, being the target of a bully can manifest in depression, anxiety, truancy and poor performance, loneliness and withdrawal. Bullies targets those who tend to less well liked, less accepted, and more rejected by peers. The relationship between perpetrator and targets is a power struggle in allowance for the superior party to oppress and marginalize their targets. The consequences of bullying and targetization is complex in its nature. Studies show that bullies are also at risk for many of the same adverse side effects as their targets. Bullying perpetration often leads to anxiety and depression, social withdrawal, delinquent behavior, and adult diagnosis of antisocial personality disorder.

We, as a society, must assist in implementing intervention and prevention tactics to combat bullying behavior. Education and awareness are essential. Begin by recognizing the many forms that bullying takes – beyond simple name calling in a second grade classroom. Bullying transcends the classroom into adulthood. At the end of Wonder, the revelation that Auggie’s bully experiences bullying brings the story full circle. Summer, along with Jack, help to balance out this narrative by offering their friendship and support to August when no one else will. Once we recognize the many facets of bullying, we can begin to have those tough conversations about choosing kindness.

 

 

Displaced Women with Disabilities: A Global Challenge

Consider the time it takes to count to sixty. In those sixty seconds, twenty-four people have just been forcibly displaced from their homes due to conflict and persecution. What are their lives like? Take a moment to imagine what your life might be like as one of the roughly twenty-two million refugees in the world today. Crisis and conflict have created violent or otherwise unsafe conditions in your area of residency. Your home is no longer safe, so you are forced to venture into a strange hostile land with no resources, no safety net, and no choice in the matter. You and your family are victims of circumstance, and yet you experience an onslaught of hostility and discrimination. Your host country denies you of your basic human rights by denying adequate healthcare, reducing access to work, and refusing to let you worship or travel freely. All you want is to go home, but home may not even exist anymore.

A refugee woman in a bright red hijab stands in a dark room with other women seated on the floor behind her.
Darfurians refugees in Eastern Chad. Source: European Commission DG ECHO, Creative Commons.

Once you have pictured yourself as a refugee, enduring terrible circumstances for the well-being of yourself and your family, then imagine the additional barriers of being a refugee woman with a disability. These compounding factors make your life is then filled even more with fear and uncertainty. As a woman, you are already at a disadvantage; women globally face extraordinary obstacles to their success and wellbeing. You now face further discrimination in the workplace, in education, and in society because of your gender. Now add the complex challenges of being a person with a disability. You are now a member of “one of the most socially excluded groups in any displaced or conflict-affected community.” Your risk for being sexually assaulted or abused now increases substantially. If you have a physical disability, any specialized medical care or transportation is most likely out of the question. Families tend to hide and isolate their family members with disabilities, so you likely will never receive the resources you desperately need. You face insurmountable barriers born of circumstances out of your control: gender, ability, and displacement due to conflict. Though you have done nothing to deserve this fate, this is your reality – just as it is for roughly thirteen million displaced people with disabilities in the world today.

Refugees worldwide face institutional violence in their host countries through mass detention, illegal deportation, and police abuse. Nonviolent discrimination against refugees is just as impactful and much more insidious. There are countless barriers to refugee’s human rights such as the refusal of host countries to allow refugees to practice their religion freely, denial of identity documents that allow refugees to travel or return home, and psychologically damaging hateful rhetoric in many countries. Overcoming these barriers along with the ones that accompany disability and womanhood can seem an impossible task. This is what we call multiple discrimination, where your identity is marginalized on multiple levels. This combination creates a perfect storm that has resulted in the devastation for many women with disabilities. The compounding factors of womanhood and disability create a crisis for refugees who fall in these two categories.

Teenage Syrian girls take part in a discussion about children’s rights, at a community centre in Lebanon. Source: DFID – UK Department for International Development, Creative Commons.

This issue raises questions — what is a refugee, and what does disability look like? The UNHCR defines a refugee as “any person forced to flee from their country by violence or persecution.” Similarly, an IDP (internally displaced person) has been forced to flee their home from violence or persecution, but never crosses into another country. Unlike refugees, international law does not protect IDPs though they suffer from many of the same issues as those with refugee status. The number of forcibly displaced people, which includes both IDPs and refugees, hit a staggering 65.3 million last year according to the UNHCR.  

The CRPD defines “persons with disabilities” as individuals who have “long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.” A report on refugee camps in Kenya, Nepal, and Uganda by the Women’s Refugee Commission showed that over half of refugees with disabilities studied fell in the category of physical, visual, or mild mental impairment. Around 20% had hearing impairments, and about 17% had mild intellectual impairments. Women who identified as having a disability were most concerned with inadequate medical care, and secondly concerned with the lack of empowerment and inclusion. Interviewees relayed a lack of physical accessibility in refugee camps, and women from adolescent to senior reported high risks of sexual violence and abuse. This does not take into account the number of invisible disabilities (disabilities that are not obvious or apparent to others) or the number of persons who are isolated from the public by their families, as all the people interviewed self-identified as having a disability.

UNHCR Tent. Source: Bureau of Population, Refugees, and Migration. Creative Commons.

A 2008 report by the Women’s Refugee Commission found another disturbing trend: persons with disabilities are rarely counted in refugee registration or data collection, and thus never receive specialized resources to aid with disability management. Little attention and even fewer resources are allocated towards the unique concerns of women with disabilities. Bathing facilities, education centers, and distribution sites all commonly had accessibility issues, which makes practicing good personal hygiene, obtaining proper education, and accessing equal resources impossible. This is an obstacle for both men and women with disabilities, but lack of personal hygiene can be detrimental for those who menstruate. Reproductive health for women with disabilities is a major issue—there is a severe shortage of knowledge and inclusion for many refugee women with disabilities. Additionally, the lack of accessible hygiene facilities and lack of adequate healthcare in refugee camps directly violates the standard set by Article 28 of the CRPD that recognizes the “right of persons with disabilities to an adequate standard of living for themselves and their families,” as well as the right for equal healthcare opportunities outlined in Article 25.

Limited physical accessibility in camps results in many refugees with disabilities forced to stay in their homes. This isolation only increases the risk of sexual assault and abuse that is already prevalent in the disabled population, and creates a dangerous situation for women and girls with disabilities who are trapped in their homes and do not have the means to defend themselves or to report their attackers. This situation occurs because displaced people with disabilities are “less able to protect themselves from harm, more dependent on others for survival, less powerful, and less visible” (Women’s Refugee Commission).  Further barriers block people with disabilities when attempting to report gender-based violence. Inadequate transportation, lack of accessible communication methods, and discrimination all contribute to the underreporting of gender-based violence against people with disabilities.

A group of refugee women stand in a line.
Darfurians refugees in Eastern Chad. Source: European Commission DG ECHO, Creative Commons.

It is essential to improve the means of data collection so that people with disabilities are represented when resources are being allocated. This is a crucial step before accessibility in refugee camps can improve. Some attention has been paid to the topic and there is a general trend towards improving humanitarian aid for people with disabilities. The Women’s Refugee Commission is committed to increasing disability inclusion in aid efforts around the world, and publishes reports on their findings. Disability programs based on the topic of gender-based violence have been widely successful, and program participants have responded with overwhelming positivity. “Stories of Change” is one program by the WRC and the International Rescue Committee that shares the stories of women with disabilities and their caregivers. Sifa, a sixteen year old girl with physical disabilities in Kinama Camp, Burundi, shares her experience:

“Over the past year, I have most enjoyed going to awareness sessions. It is important to me that the community sees me as not just a girl without a leg, but as a person with rights and a future. I also really appreciate the materials from IRC, especially sanitary napkins and supplies, because often people forget that girls our age need them. With my new leg and my chance to have an education, I feel safer, smarter and less likely to be taken advantage of.”

Though promising, much work remains in the field of humanitarian aid for women with disabilities. While transparency and accessibility have improved, we should not become satisfied with any standard of living that is less than ideal. Women with disabilities have the right to the same freedoms as more privileged refugees, and refugees have the same rights as every human on Earth. Water, food, hygiene, shelter, freedom from violence, work– all of these items are absolutely and unequivocally vital as a human right as enshrined in the UNDHR. For too long we have settled for inadequacy for people with disabilities because society demonizes and rejects them as human beings. As we have raised the standard of human rights, we must continue to emphasize the most vulnerable people who suffer from compound discrimination. To champion the rights of women must include all women. This unequivocally includes the rights of displaced persons along with the rights of people with disabilities; gender directly impacts both one’s experience with ability and displacement. We can and must strive to do better in our fight for the rights of one of the most marginalized populations around the world.

 

We, too, are America

a picture of a microscope
microscope. Source: milosz1, Creative Commons.

We see you. More specifically, I see you. I see you and I understand your fear. Your fear, though, is not of our ascent and overthrow of your supremacy. Your fear is that we–those for whom you believe yourself superior in gender, race, ability, intelligence and religion, but equal to under the law—will treat you as you have treated us. This is your actual fear.

For so long, you have hidden behind your power to give and take at will and random, without accountability. You believed might and standing would continually protect you as you abused, assaulted, and harassed us behind closed doors, in elevators, at parties, or in cars. You assumed your strength would guard against numbers because silence remained your closest companion until it revealed you. Now, silence is your betrayer and light is shining into the darkness. With light comes freedom.

However, not for you.

Finally, thanks to the unfaithfulness of silence, the light that comes with freedom will change you, as the nullifications of uneasy interactions, creepy glances, and videotaped confessions that “boys being boys” and “locker room talk” conclude what we have known all along: you are an insecure predator.

You always have been.

For centuries, you employed power to mask your insecurity while building empires and corporations upon the backs of those “under your feet and purview”. You made rules and assured yourself they did not apply to you. The rules are changing, and you are afraid. You shudder at the possibility of the enforcement of an unjust law you created, applying to you. You are fearful that you will rot in jail for a crime you may or may not have committed, based upon the verdict of 12 who are not truly your peers because they do not look like, live like, or know what it like to be someone like you. You will know what it is like to tell your side of the story and find yourself defending your participation in and motives about the situation that caused you to end up here. Identified as you truly as a perpetuator of trepidation .

You always have been.

Your taxonomy and modus operandi, whether on the forced labor field of terror, in a Las Vegas hotel room or Charleston church, or behind a “news” desk or podium, remains hiding in plain sight because the condition of many is blind submission. The conditioning served us well too, for a while. However, now we are woke. Eyes wide open and aware of the insidiousness of your nature. This scares you, so you label us a threat because we discarded the previously employed labels you doled out. Threat, in your mind, encompasses all manner of challenges you have not experienced during your time in authority. We are a threat to your domination, to your supremacy and privilege. This is what frightens you. The poisonous fruit you provided opened our eyes to the facts about who you are and what we have known all along: you are an idol worshipper.

You have believed the lies told to you and by you for so long, that in many ways, the facts cannot penetrate the walls around your heart and mind. You contrive revisionist history as a method to mask the brutal reality of your ancestors, unwilling to yield to handwritten letters, photographic and videotaped evidence that counter your claims, and absurdly ask us to disbelieve what we see what our eyes, hear with our ears, and experience over time. The words you employ are not for freedom of expression but an expression of your hate, leaving us to wonder if you know how to express yourself in a manner to prove your point without resorting to vileness. You are not out to institute unification, rather everything about you proceeds from an inner core of division. You are in an identity crisis.

You always have been.

Conflicted on one hand about the creation of humanity as made in the image of an unseen God, while on the other, using some as cattle and unpaid laborers, burdened by cherry-picked scriptures applied to build a theology of exclusion. You claim to seek the facts through the reading of words written in years past but systematically avoid anything that may shatter the illusion of grandeur created in the ivory towers which redlining amassed. You proclaim belief in gender equality, except when it comes to leadership, reproduction, sexual experience, and wages. You defend colonization and imperialism due to a misapplied belief that those demonized and dehumanized are ignorant and incapable of civilization; however, pyramids, irrigation systems, and social order existed before the feet of your ancestors stepped on this, and that land. You balk at peaceful solutions and challenges to your authority by responding with insults and name-calling as though life and death are games played in a schoolyard. Even when you are wrong, you are uncompromised in your steadfastness to show your superiority, while marketing yourself as a humble follower of God. You want to be a mirror without looking in one.

I see you.

We see you.

We know the facts.

The fact is, change has arrived. For we, too, are America.

 

Additional readings:

Langston Hughes

The Color of Law

America’s Original Sin

Nations and Nationalism

Jessica Valenti