The Shift from “Autism Awareness Month” to “Autism Acceptance Month”

The Autism Society of America, the United States’ oldest leading grassroots autism organization, is celebrating Autism Acceptance Month (AAM) in April 2021. This month was previously known as Autism Awareness Month, but this year, the Autism Society is taking to social media to assist it in changing the title to Autism Acceptance Month.

AAM
Autism is a developmental disorder that affects 1 in 59 Americans as of 2020. (Source: Yahoo Images)

In 1970, the organization launched an ongoing national effort to promote autism awareness and to assure that all autistic people are able to achieve the highest quality of life possible. The first annual National Autistic Children’s week commenced in 1972, which evolved into AAM. This year’s campaign is titled “Celebrate Differences,” and it is “designed to build a better awareness of the signs, symptoms, and realities of autism.” The 2021 focus is to “provide information and resources for communities to be more aware of autism, promote acceptance, and be more inclusive in everyday life.” With the prevalence of autism in the United States rising from being 1 in 125 children (2010) to 1 in 59 children (2020), the need for AAM is greater than ever.

So why the shift from Autism Awareness Month to Autism Acceptance Month? Christopher Banks, President and CEO of the Autism Society of America, puts it like this: “While we will always work to spread awareness, words matter as we strive for autistic individuals to live fully in all areas of life. As many individuals and families affected by autism know, acceptance is often one of the biggest barriers to finding and developing a strong support system.” The shift in terminology fosters acceptance to ignite change through improved support and opportunities in education, employment, accessible housing, affordable health care, and comprehensive long-term services. Acceptance is so integral that the Autistic Self Advocacy Network (ASAN) has been referring to April as Autism Acceptance Month since 2011, expressing that accepting autism as a natural condition is “necessary for real dialogue to occur.” The Autism Society of America is also advocating the federal government to officially designate April as “Autism Acceptance Month” since there has never been a formal designation for AAM.

The United Nations has, however, designated April 2nd as World Autism Awareness Day that is commemorated internationally. This year, the UN plans on hosting a virtual panel discussion titled “Inclusion in the Workplace: Challenges and Opportunities in a Post-Pandemic World” on April 8, 2021. The panel will consist of individuals on the autism spectrum who have personally experienced challenges in the employment market, especially in light of the COVID-19 pandemic.

AAM
The UN designated April 2nd as World Autism Day. (Source: Yahoo Images).

 

Acceptance is something the global population has been and continues to struggle with, but engaging in conversation and learning about one another’s perspectives, we can individually become accepting. And if the global population decides to embrace such a philosophy, our world can be filled with more love and acceptance and less hatred and stigmatism. Let us all aim to be aware and accepting of the global autism community as well as others. It starts with you and educating yourself.

Inclusivity in Education: Cooperative Learning with Special Education

Students sitting in a classroom.
“classroom.” Source: Lead Beyond. Creative Commons.

In 1954, the United States Supreme Court overruled the “separate but equal” clause of Plessy v. Ferguson with the case of Brown v. Board of Education of Topeka, declaring that “separate” educational facilities are inherently unequal. While Brown v. Board was aimed at addressing racial segregation, it is worth noting the implications of this view of separate educations because students with learning disabilities are often educated separately from their peers.  Our current education system divides students into different categories and programs based on their perceived levels of academic ability under the assumption that this is the best way to help students reach their fullest potential.  This is problematic and leads to students’ missing the benefits of an inclusive classroom.  Though it would not be a simple task, students who have learning disabilities should be educated alongside students who do not, using cooperative classwork, where students work together to complete an assignment or task, whenever possible.

The Americans with Disabilities Act defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activity.” For this blog, I will be focusing on learning disabilities, particularly those that do not completely inhibit functions that are vital in a traditional classroom, such as communication. However, I do recognize that the line that I am drawing between which disabilities/experiences of disabilities my proposal would apply to and those it would not is not completely clear, as no two people with the same disability have the same experience. The degree to which a person is able to participate in inclusive and cooperative learning would have to be determined on a case by case basis.

Article 26 of the United Nations’ Universal Declaration of Human Rights (UDHR) states that everyone has a right to an education.  Article 24 of the UN’s Convention on the Rights of Persons with Disabilities (CRPD) states that all people with disabilities have the right to “an inclusive education system at all levels and lifelong learning.”  The use of cooperative classwork among students with and without disabilities would hopefully help more effectively access these rights for both parties.  Additionally, by helping the members of each group become more accustomed to interacting and being part of a common social group, this can also help individuals with the types of disabilities that are focused on in this blog to access their right to employment (which is given in article 23 of the UDHR and article 27 of the CRPD) and their right to participation/inclusion in their communities (article 27 of the UDHR and article 19 of the CRPD).

Our Current System

When discussing whether students who have disabilities should be educated separately from students who do not, it is helpful if we begin by considering why we use the system we currently have.  A literature review titled “Implicit Assumptions in Special Education Policy: Promoting Full Inclusion for Students with Learning Disabilities” was published by Moira Kirby in the Child Youth Care Forum in 2016.  In the review, Kirby aimed to find special education trends relating to “inclusive practices, Response to Intervention (RTI), and student achievement.”  She argues that the educational system currently used in the United States, while meant to increase access to education, perpetuates certain students’ isolation from others, as it is based on problematic assumptions about disabilities.  The first assumption is that disabilities are deviant conditions that should be “eradicated.”  The second is that “all special services should be delivered in a separate environment.”  These assumptions inform the implicit biases about degrees of educational ability.  Kirby also argues that these assumptions must be changed in order to “promote access and equality for students with learning disabilities.”   In her article, she states, “The question is not, how can we fix a disability, but how can we make our classroom environments a place where all students can learn, regardless of their need.”

The educational system that is currently in place in the US involves separating students with learning disabilities, “low-performing” students, students who meet “average” expectations, and “high-performing” students.  This system is well-intentioned, theoretically giving each group of students the unique resources they need to reach the height of their personal capabilities.  In practice, however, this system is quite flawed.  It is a system based on expectations (typically informed by assumptions and implicit bias), which become harmful to many students, especially those with learning disabilities, due to stereotype threat.  Stereotype threat is “the risk of confirming negative stereotypes about an individual’s racial, ethnic, gender, or cultural group” and the effect that that risk can have on the individual’s performance.  Many people assume that students with disabilities will do poorly in school, and when students with disabilities know this, they often adopt those same expectations for themselves.  If academic success seems unlikely or even impossible, this can become a barrier to the motivation and access to resources that can lead to it.  Stereotype threat also leads students with learning disabilities to underestimate the quality of their academic performance overall, even at times when they are doing well.  They can start to assume that they simply cannot do well in school.

This sort of negative self-evaluation can also be damaging to a person’s mental health and well-being.  If one consistently sees themselves as not good enough, smart enough, or strong enough to do things well, it can be easy for them to fall into depression, anxiety, or another struggle with mental health.

Another problem that comes with stereotype threat is that it takes up precious cognitive resources.  Students spend part of their cognitive resources thinking about the expectations they are held to, distracting them from the work they are trying to do, and preventing them from using all of their resources to their advantage, which contributes to a decreased ability to perform well.

In her research, Kirby found that teachers who had been asked about inclusion in the classroom tended to attribute the success of attempts at inclusion to the students’ physiological traits rather than the value of inclusive practices.  She points to this belief as one that could potentially lead a teacher to believe that students with disabilities could be taught only separately from others.  They were also often found to lack confidence in their abilities to teach students with disabilities.  Parents also either had negative or neutral views on the impact of inclusive education.

In 2015, “68.2% of students with learning disabilities spend 80% or more of their day in the general education classroom, while 24.1% spend 40-70% of their day in the general education classroom.”  This in no way aligns with the idea that students with learning disabilities need to be educated separately from other students, and it highlights a point of concern.  If many general education teachers do not feel like they are able to teach students with disabilities, and most students with disabilities spend a large part of their day in general education classrooms, what implications do these things have regarding those students’ education?  Ideally, students would be educated by someone who felt they were qualified to teach them rather than someone who is uncertain about it.  If students with different educational needs were consistently taught in the same classroom, teachers would all need to go through the training necessary to teach students with special educational needs, allowing them to better support their students.

Students listening to teachers in a classroom.
“Classroom.” Source: PAL LTER, Creative Commons.
An Inclusive Educational Environment Can Be Beneficial For All Students

The negative impact that a segregated educational system can have on students with disabilities is not the only reason to move towards a more inclusive system.  Evidence that suggests that inclusive classrooms can lead to positive outcomes for all of the students involved.

In their article “The challenges of implementing group work in primary school classrooms and including pupils with special educational needs,” Ed Baines, Peter Blatchford, and Rob Webster review the results of two research projects: the SPRing (Social Pedagogic Research into Group-work) project and the MAST (Making a Statement) project.  Realizing that most studies regarding collaborative work in education that had previously been performed had been on a small-scale and short-term basis, the authors reviewed the results of these two projects to come to a better, more reliable understanding of the challenges of inclusive group-work in primary schools.

The SPRing project was a five-year-long project that aimed to “develop and implement with teachers a programme of principles and activities that incorporated group work  into curriculum and everyday school activities” and “to evaluate this programme relative to a control group in terms of academic progress, behavioral interaction and dialogue, and attitudes and motivation towards learning.”  The developed program included a handbook and six training sessions where teachers could develop the skills that they need to incorporate group work into their lessons.  The four main areas covered by the program included “preparing the classroom and group context for group work,” “preparing lessons and group-work activities,” “preparing adults to support pupils and groups,” and “preparing pupils for group work.”

The results of the SPRing project show that, relative to the control group, the students that participated in the program made more progress in general science tests, “were more actively engaged in task interactions,” had more sustained interactions, and “engaged in more high-level reasoning talk.”

The MAST project “involved systematic observation and case studies” of students with known special educational needs that were being taught in general education classrooms. This project’s results provided Baines and his co-authors with information about the interactions between students with special educational needs and adults/peers.  The project found that students with special educational needs “were half as likely to work with or alongside peers” as other students.  It was also found they were often isolated from the other students.  Some of the reasons for this isolation included a student with special educational needs choosing to sit away from the others, and other students being afraid of or nervous about working with them.  One factor that may contribute to each of these reasons could be that the students with special educational needs that were a part of the study may have had poor social and communicational skills.  While difficulties with communication are an aspect of many learning disabilities, inclusive group work may give these students an opportunity and a safe environment in which they can develop these skills (though a student should never be pushed to do group work if it causes them an amount of stress that is genuinely detrimental to their well-being).

This isolation of students with special educational needs may also result from traditional students and school faculty viewing people with disabilities as “the other” as being outside of normal.  This would help to explain why traditional students may be hesitant to associate with students who have disabilities.  It could also explain why students with special educational needs isolate themselves from other students, as they may have internalized their peers’ view of them.  They may feel like they are on the outside looking in, unable to be a part of the rest of the group.

In her literature review, Moira Kirby also addresses some of the benefits of inclusive educational settings, as suggested in different case studies.  In one study, elementary school students scored higher in reading and writing when taught in a general education classroom rather than a separate special education classroom.  Another study found that eighth-graders with learning disabilities had “significantly higher scores in math academic achievement tasks and self-concept” when taught in an inclusive classroom. Students from another study scored higher in math, science, social studies, and language arts.

Students without learning disabilities may also benefit from inclusive educational environments.  Students who perform well could potentially benefit from working with students with disabilities and helping them understand the topics they are learning about and the group work they might do.  Re-wording and explaining a concept to another person can

help cement one’s understanding of it.  Additionally, if all teachers have to teach classes with children with different educational needs, they would have to be prepared to work with students with disabilities, which would improve the support that those students receive and broaden teachers’ perspectives.  This could allow teachers to develop skills that would be beneficial in teaching all students, with or without disabilities.

 Concerns and Challenges

Though there are many advantages to adopting a more inclusive educational system, there are still concerns and challenges that also come with it.  One concern is that students with learning disabilities may face social rejection from their peers.   For their article “The Social and Emotional Situation of First Graders with Classroom Behavior Problems and Classroom Learning Difficulties in Inclusive Classes,” Johanna Krull, Jürgen Wilbert, and Thomas Hennemann surveyed 2,839 first graders and found that students with “classroom learning difficulties” (CLD) and “classroom behavioral problems” (CBP) were at a greater risk for social rejection than their peers.  However, the authors found several outliers in their data, where students with CLD or CBP had higher rates of social acceptance, and they interpret this to mean that, under the right circumstances, an inclusive education system is possible.  In their article, Baines and his co-authors suggest that social rejection in this context can decrease over time when students are involved in inclusive group-work (if the students remain in the same groups throughout that time). Group work allows students with disabilities who struggle with social skills to develop those skills. It will enable other students to better understand people’s experiences who are different from them, which may lead them to be more willing (and happier) to be inclusive and build friendships with other students.  If a student has no/little prior experience with students with learning disabilities, it would not be surprising to find that they are nervous or uncomfortable interacting with them.

When discussing the possibility of an integrated classroom, people are also concerned with the impact of having children with severe behavioral issues in general education classrooms, as they may become distracting or disruptive to the point of preventing any productivity in the class. This may be a factor that needs to be considered on a case-by-case basis. Some children that are deemed as being too disruptive have the potential to become less disruptive with exposure to a traditional classroom setting.  There are likely situations where students truly are too disruptive to allow for a productive classroom, but that is certainly not always the case.  It is important that, if a student is found to behave in a distracting way, that they are not immediately moved into another classroom after a single incident (although consideration should be given to the severity and the nature of the interruption). They should be given the opportunity to try and adjust to the traditional classroom environment before they are placed in a different one.

Another concern is that educating students at such a range of degrees of ability in the same classroom might prevent both students with learning disabilities and students that are currently in advanced programs from reaching their fullest academic potential. This concern is largely connected to the assumption that being in the classroom means that students would all be learning from the exact same curriculum, but that is not necessarily true.

In her article, Kirby suggests that a completely inclusive classroom might not involve basing lesson plans on the categories that students have been assigned to.  Instead, each student would have an Individualized Education Plan (IEP). In our current public education system, children in special education programs must have an IEP, a “map that lays out the program of special education instruction, supports, and services kids need to make progress and thrive in school.” Each child has an IEP team, including their parents, at least one general education teacher (unless the child does not work with any), at least one special education teacher, a school district representative, a school psychologist/specialist, and the child.  After the IEP is developed, the team regularly meets to discuss progress and possible changes for the plan.  If every student, whether they have general or special educational needs, has an IEP, then (in theory), each student could have their personal needs recognized and met in the classroom.  Kirby also suggests that making IEPs standard for all students could reduce the impact that the stigmatization of learning disabilities has on students, as school faculty would be less reliant on separating students into different/broad categories to teach them.

Of course, creating an IEP for every student in the public school system is much easier said than done and is a much more attractive idea in theory than in practice.  It would require a significant shift in the allocation of resources in education, which may not be practical with the financial resources we currently have access to.  It would also be asking many teachers, as they would no longer be able to teach with a singular lesson plan. It is unrealistic to expect teachers to carry this burden themselves, as they are already spread too thin, given more responsibilities than they can reasonably handle.  Having IEPs for every student would likely require a serious increase in the number of teachers at each school or at least an increased/reinforced support system for school faculty. Perhaps a more feasible solution could be developing IEPs for students with a clear need for increased educational support that involves their being more present in the traditional classroom than in a separate one.  While this is still likely to feed into the stigmatization and othering of students with disabilities, there do not seem to be any strong alternatives that are both practical and successful in avoiding stigmatization altogether.

Conclusion

In short, we should aim to educate students with and without learning disabilities together whenever possible, even though it will take a lot of time and effort to do so.  We currently separate students based on expectations of their academic abilities, and these expectations are informed by and reaffirm problematic assumptions about people with learning disabilities.  This can be harmful to people with learning disabilities and prevent students with all degrees of educational needs from accessing the benefits that can come from an inclusive classroom.  However, it is important  that we recognize and genuinely consider the concerns and challenges that arise when we look to put inclusive education ideals into practice.  It is also important to recognize that the conclusions that can be drawn based on the resources used to support this argument are limited, as many gather data from anecdotal situations and small samples sizes.  These factors prevent the results of sources from being reliably representative of experiences with inclusion and students with learning disabilities on a larger scale.  The application of my argument is also limited, as I have focused on students with learning disabilities that do not completely prevent them from effectively learning or functioning in a general education classroom.  While an integrated school system is generally optimal, there are some students for which that kind of system genuinely would not work.  We cannot treat all students with disabilities as if their experiences are the same by assuming that all would do poorly in an inclusive classroom or that all would be unquestionably better off in an inclusive classroom.  Overall, even though it will not be easy, even if we can never achieve a perfectly integrated educational system, it is an important goal which we should work towards for the benefit of all students and their educational rights.

World Diabetes Day

A hand pointing to text underneath it which reads "World Diabetes Day"
World Diabetes Day. Source: Ashley Huslov, Creative Commons

World Diabetes Day is recognized globally on November 14th. It’s important to recognize the progress we’ve made in managing diabetes. In the past, a diagnosis of diabetes was devastating in many ways: type I and insulin-dependent type II diabetes were often fatal until the discovery of insulin in 1921; gestational diabetes drastically worsened pregnancy outcomes for women and their babies; and other types of type II diabetes resulted in severe complications. Diabetes now has become known as a serious, but treatable, disease. While medically we’ve come a long way with the treatment of diabetes, there are still improvements that need to be made in relation to the social treatment.

Despite the great strides made in the medical community in regard to diabetes, people with diabetes still face hardships and discrimination in the workplace, the classroom, and in the health sector. Many people with diabetes need accommodations in the workplace that are protected by the Americans with Disabilities Act (ADA). For example, many people with diabetes have rapid drops or spikes in blood sugar—hypoglycemia and hyperglycemia, respectively—and they need to take time to remedy it. If an employer does not accommodate these needs, they are in direct violation of the ADA. There are exceptions, such as when hyperglycemia, hypoglycemia, or the breaks make the employee unable to do the essential function of the job. However, in many workplaces, these breaks are possible.

Kristine Rednour was hired as a reserve paramedic for the Wayne Township Fire Department (WTFD). When she was hired, she let the WTFD know that she had type I diabetes. She was promoted to full time, and during work had two hypoglycemic episodes within the same year, which affected her ability to respond as a paramedic. She was put on paid leave, during which she was required to have the medical director clear her. He cleared her for restricted duties and with workplace accommodations, which the WTFD refused to put in place and instead fired her. She sued the WTFD for violating the ADA and won. This is just one of many examples of workplace discrimination that people with diabetes face.

The ADA also protects children at school that have disabilities, including diabetes. However, like with employment discrimination, discrimination at school still occurs. Schools that receive federal funding are required to be able to make accommodations for students with diabetes, such as allowing them to have snacks and having staff that is qualified to administer care.

Some schools don’t offer these accommodations, especially the latter, which can put children at risk for life-threatening medical complications. Some schools even tell parents that their children will not receive medical assistance from staff even if the complications have become so severe that they are unconscious. Often, parents have to put their jobs on hold to be able to make trips to school to check on their children, potentially placing them under increased financial strain.

Blood Glucose Monitors can send blood sugar levels to an app that the child can download and have more immediate updates on their blood sugar. For some children with severe type I diabetes, they can find out life-saving information about what would otherwise be a severe drop in blood sugar. However, many schools are unwilling to accommodate students by letting those with diabetes access their phones or the Wi-Fi, which puts them at risk for missing a life-threatening drop in blood sugar.

Some children have been denied entrance into schools because they have diabetes, which violates the ADA if the school receives federal funding. Many students are sent to schools that they are not zoned for because the schools closest to where they live do not have staff trained to take care of them, despite the requirement of this accommodation. This means that parents have to drive their students to a school farther away, potentially disrupting their ability to get to work. Some schools participate in this type of discrimination knowingly, while others do not understand enough about diabetes or the ADA. Regardless, denying entry into a school because of a disability is a direct violation of the ADA.

Due not only to the discrimination those with diabetes face, but also the stress and anxiety of not knowing when they’ll have a drop or spike in blood pressure, people with diabetes often suffer from worsened mental health, which according to many sources, including the UN, is a human right. This lessened mental health takes many forms: people with diabetes are two to three times more likely to suffer from depression; diabetes distress can occur when a person with diabetes feels controlled by their illness instead of the other way around; and when physical health gets worse, mental health often follows. It is important for people with diabetes to know they can seek medical attention for their mental health as well as their physical health.

The final place people with diabetes face a violation of their human rights is in the healthcare setting. Healthcare is expensive even without taking into account chronic diseases, especially medication. Insulin is a relatively cheap and easy medication to make. In the 1990s, a one month supply was less than $50, whereas now it’s upwards of $200, which is not accounted for by inflation. For people without insurance, or those that are underinsured, this can put a huge financial burden. This has led to people with insulin-dependent diabetes to ration their insulin, which can lead to death. For example, a nurse, who knew how to manage her diabetes, was found dead due to not using enough insulin. For people with insulin-dependent diabetes, insulin is a human right, which is being denied to many by the sharp increase in prices.

People with diabetes now are able to live happy and healthy lives, especially compared to a hundred years ago. However, they are still set back due to discrimination and human rights violations. It is important as a society to work towards removing the barriers that people with diabetes, among other disabilities, face so that they have access to health, both mental and physical.

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

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

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

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

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

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

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

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

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

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

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

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

Golf and Life Lessons: The Dennis Walters Story

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

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

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

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

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

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

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

Thoughts on Homelessness in Birmingham

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

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

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

Responsibility of the State

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

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

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

A look at more vulnerable populations

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

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

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

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

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

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

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

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

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

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

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

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

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

More immediate examples for anyone to help everyday

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

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

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

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

Additional Resources:

Federal Links Relevant to homelessness:

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

 

Misleading Media: Disabilities in Film and Television

 

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

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

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

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

Character Archetypes 

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

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

The Helpless Victim 

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

The Evil Villain 

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

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

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

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

The Inspirational Hero 

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

Paul Hunt’s List of Stereotypes 

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

The Connection to Human Rights 

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

How Do We Identify Good Representation? 

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

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

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

An Example of Good Representation: A Quiet Place 

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

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

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

Image showing a sculpture of a globe outside the United Nations building in New York.
Globe outside the United Nations. Photo by Samih Eloubeidi.

A few months ago, I was sent to the United Nations as an Official Rapporteur to the 12th Session of the Conference of State Parties to the Convention on the Rights of Persons with Disabilities (COSP). The theme of this year’s COSP was implementing the Convention on the Rights of Persons with Disabilities (CRPD) to ensure the inclusion of persons with disabilities (PWD) in society. While at the conference, I attended several side events that highlighted how different NGOs, companies, and organizations have made efforts to include PWD in all facets of society. Furthermore, I had the opportunity to transcribe the General Debate and Round Table Three Discussion of the General Assembly, both of which focused specifically on the inclusion of PWD in society through participation in cultural life, recreation, leisure, and sport. For this blog post, though, I want to focus on two of the side events I attended, because I believe that the personal lessons they taught me were the most valuable lessons I learned at the conference.

The first side event I attended detailed how artificial intelligence (AI) and other technology can be used to increase the inclusion, participation, and independence of PWD. Many of the panelists noted that while AI can help PWD, it can also be an obstacle that further perpetuates the societal exclusion of PWD. In response to this point, Megan Lowery, the representative for Microsoft, highlighted the importance of including PWD in the creation and dissemination of technology, noting that their input is indispensable for ensuring that the AI is in fact facilitating PWD’s inclusion and participation. As a testament to this, Alejandro Moledo from the European Disability Forum (EDF) detailed “Plug and Pray?”, a report created by the EDF to provide a perspective from PWD on emerging technologies. The report highlights the concerns and risks PWD have about these technologies and provides partial recommendations to policy makers and AI creators.

The second side event I attended focused on deinstitutionalization in the Arab region to support the inclusion and independence of PWD. As a Middle Easterner myself, I was particularly excited about this panel and the insights it would provide. Her Excellency Haifa Abu Ghazaleh and Her Excellency Ghada Wali both detailed that institutions should be made to provide health care, educational opportunities, and other resources for PWD rather than just being institutions where PWD are placed. In this way, PWD would have systems of support that would allow them to live independently while also giving them access to opportunities that could increase their inclusion in society. The discussion was opened to the panelists, all of whom were PWD; Mr. Ibrahim Abdullah, Mr. Mohammed Lotfy, and Mr. Muhannad Alazzeh. Mr. Abdullah stated that he is supportive of deinstitutionalization due to the fact that institutions isolate children with disabilities from their communities, while both Mr. Lotfy and Mr. Alazzeh supported transforming the institutions into support systems for PWD.

While these events were incredibly informative, it is not the information alone that has stuck with me. As I watched the panelists and speakers share their thoughts, the phrase, “a seat at the table”, continuously came to mind; the panelists and speakers at both side events I detailed were PWD discussing issues that PWD face. To me, this is what true representation is supposed to look like. When dealing with issues pertaining to any minority group, the people from that minority group should be responsible for leading the discourse. It is upsetting to see, then, that many people try to lead discourse when the discourse is not theirs to lead. Being well versed on the plight and issues that other minority groups face does not and should not make allies feel as though we can adequately address these issues. It is true that all minorities face struggle, but that is the extent of the commonality between us; every minority faces struggles differently, and we cannot assume that our own struggles are similar to, or even on the same level as, the struggles others face. After being at the conference, I realized that sometimes I too try to be a voice for others. However, I understand now that when it comes to discourse pertaining to other minorities, my voice is solely meant to be used to support, rather than to supplant, their voices.

From this, I also learned what it means to truly be an ally. An ally is someone who stands on the periphery of the aforementioned table, allowing the ones whose issues are being discussed to be the ones claiming the seats. However, as allies, we cannot be selective on which tables we stand on the periphery of, and this is where the conference revealed a major fault in my being an ally. I pride myself on being an adherent to intersectionality, so I was disappointed in myself when I realized that I have never included PWD within the realm of my discourse pertaining to minority rights. However, to be pro-black, pro-Muslim, pro-women, etc. is to be an advocate for the rights of PWD; these identities are not mutually exclusive. Thus, when I say that I am an adherent to intersectionality, I have a responsibility to include all minorities within this claim of adherence.

I believe that for any internal growth to occur, we need to be challenged. Without being challenged, our thought processes and views of life are static, hindering us from moving forward and evolving into better versions of ourselves. I am grateful to the IHR and Dr. Reuter for giving me the opportunity to attend the COSP, for without this experience, I do not think I would have had these faults revealed to me as clearly as they were. As I move forward, I will carry these lessons with me and continue working on bettering myself as both a person and an ally.

Disability and Isolation in Our Modern World

by Marie Miguel 

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

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

Misunderstanding and disabilities

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

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

As a society, what can we do?

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

Preventing social isolation

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

 

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

Monstrous Misrepresentation: Disabilities in the Horror Genre

Empty seats in a movie theater.
Movie Theater. Source: Matthew Berggren, Creative Commons

Far too often popular media, particularly horror movies, paint people with disabilities as monsters.  Scary movies are notorious for taking completely real health conditions and distorting them into what appears inevitably dangerous.  In some cases, they create villainous characters with physical appearances that are seen as abnormal based on real conditions that have physically visible symptoms, like acromegaly.  In others, they create characters based on real mental health conditions, like dissociative identity disorder, and depict them as if they have the powers and the thirst for evil of a comic book super-villain.  These dangerously inaccurate depictions of disabilities dehumanize entire groups of people in one fell swoop, often without any clear recognition from the creators of the damage they have done.  

Acromegaly in Gerald’s Game 

In Stephen King’s novel and film Gerald’s Game, Raymond Andrew Joubert is a grave robber, necrophiliac, and serial killer.  He is also a character with acromegaly, a disorder that occurs when too much growth hormone is produced due to benign tumors (adenomas) on the pituitary gland.  Acromegaly is associated with many serious health problems, such as type II diabetes, high blood pressure, an increased risk of cardiovascular disease, arthritis, and, if not treated, even death.  The most visible and easily recognized symptoms of the condition are unusual growth of hands and feet, a protruding brow bone and lower jaw, an enlarged nose, and teeth that have spaced out.  The condition does not make a person any more dangerous than any other.  It seems that King only chose to create this character with this condition because of the physical appearance that is associated with it.  This is a problem, because it perpetuates the common, preexisting belief that people who look different from what is deemed “normal” are dangerous and should be feared.   

With the right lighting and camera angles, anyone could look terrifying.  There is no reason to use people with real health conditions in a way that only makes life and society’s understanding of them more difficult. 

Dissociative Identity Disorder 

Dissociative identity disorder (DID) is one of many mental health conditions that has experienced significant harm due to failed representation in the media.  It is far too common to find that fictional media depictions of DID lack any presentation of the true facts of the disorder.  The Entropy System is a DID system who posts educational videos about DID on YouTube.  Their series on DID in the Media does a thorough job at analyzing the quality of different examples of representation of DID in films.  They use four main criteria in assessing each work.   

First, does it “communicate proper diagnosis and treatment”?  Many attempted depictions of DID fail to even name the disorder accurately and call it “Multiple Personality Disorder”, its name prior to 1994.  These works also often suggest that all systems (the collective term for one’s alters/identities) with DID are working towards the same goal with their treatment: to integrate all the identities into one.  Some systems are not interested in integrating.  The Entropy System points out in many of their videos that an important part of treatment, regardless of the system’s level of interest in integration, is establishing strong communication between the different alters. 

Second, does the work address the cause of DID?  The disorder is a result of repetitive, severe trauma that occurs during childhood. According to the theory of Structural Dissociation, no person is born with a fully integrated personality.  This means that, when we are children, we are made up of multiple individual personalities or “ego-states,” which integrate and become a single personality between the ages of six and nine.  Each of these ego-states is responsible for performing a different role.  DID occurs when trauma prevents these ego-states from integrating.  The ego-states develop into individual identities known as alters. 

Third, are the alters shown as part of a unit, or as extra bits for a central/main identity?  It is important to recognize that no single alter is more real or significant that any of the others.  They are all parts of the same whole. 

Fourth, is the character relatable?  Are all the alters well-rounded and realistic? 

DID in the Media 

One of the most common and most serious misconceptions that the horror genre frequently perpetuates about DID is the idea that there is such a thing as a “bad alter.”  Within a DID system, each alter has a role that it performs to help protect the person with DID.  One alter is responsible for day-to-day living, while another might be responsible for holding on to certain trauma memories that would make day to day living extremely difficult.  One alter, called a persecutor, may mimic abusers or other people who have caused trauma to the system in an attempt to keep the system from re-experiencing the abuse.  When horror movies depict a person with DID as being dangerous to others, they typically do so with a severe misrepresentation of what persecutor-alters are and what they do.  The vast-majority of the time, if persecutors cause harm, it is towards the person with DID themselves and not other people.  DissociaDID, another system that posts education videos about DID on YouTube, has a video that is helpful in understanding alter roles, persecutors, and how they function within a DID system. 

Films like Split and Glass are extremely harmful to the DID community, because they glamorize the idea of a “bad alter” and depict people with DID as being villains or monsters, which is far from the truth.  These two movies involve a character with DID named Kevin Wendell Crumb, who has a bad alter named “The Beast” that has super-human abilities and wants to get rid of the “impure” people of the world.  In Split, the other alters in the system kidnap girls and watch over them until The Beast comes out.  To say that DID is depicted in an unrealistic way is quite an understatement. 

For many people in the general population, their only exposure to disorders such as DID is through the media.  When so much of the representation is riddled with harmful, fear-inducing inaccuracies, people who see that representation start to view people with those disorders in real life as being inherently dangerous or violent.  This is why quality and accurate representation is so important. 

The symbol for handicap parking in yellow paint on black pavement.
handicapped zone parking spot symbol on asphalt New Zealand. Source: Mr. Thinktank, Creative Commons

The Connection to Human Rights 

As we continue to push for more representation in popular media for marginalized communities, we must also make sure that that representation is accurate and not harmful to those communities.  When horror movies use people with disabilities in their attempts to scare their audience, they create/reinforce a belief that people with these disabilities in the real world are dangerous and scary.  This is a human rights issue, because prejudice, discrimination, and violence are fueled by fear.  Fear impacts who parents will let their children play with, and how children treat their classmates. This can interfere with one’s access to their right to an education, which is established in Article 26 of the Universal Declaration of Human Rights (UDHR). Fear affects how we interact with people we pass by on the street and people’s willingness to help find ways to improve people’s life experiences.  This can impede one’s access to their right to be an active part of their community (Article 27) and their right to seek employment and have favorable working conditions (Article 23). 

Non-disabled people need to use the privilege they have to advocate for those without it, and a person is less likely to want to advocate for someone who they are afraid of.  In order to have the basic human rights of all people fulfilled, we need to all be able to look at each other as members of humanity, and fear, especially unjustified fear, inhibits that. 

Conclusion 

I’m not going to lie or try to pretend that I have never let these kinds of portrayals of people with disabilities change the way I look at them.  Thankfully, I know better now, but there are still moments where I catch myself briefly slipping back into old ways of thinking.  It is important that we as consumers of media recognize the harm that these failed representations of an already marginalized group have caused and that we do our best to avoid supporting them monetarily.  We need to increase awareness of this harm, in hopes that, one day, the horror genre will no longer be made up of so many destructive stereotypes.   

Rather than the same stereotypically use of people with disabilities as the antagonists in film, why not increase their representations as protagonists?  Imagine, a horror movie where the protagonist is a person with DID, whose alters all work together to survive while also dealing with the memory loss that often comes with the switching of identities.  The film A Quiet Place is a brilliant example of positive and constructive disability representation.  One of the main characters is a young deaf girl, and her disability ends up saving her family.  In a world where making noise is a deadly act, their knowledge of sign language allowed them to communicate without risking their lives.  This is in complete opposition of the stereotypical idea that people with disabilities are burdensome for their loved one.  The makers of the film clearly did their research and were able to help spark important conversations about disability representation.