On Monday, March 9th, the Institute for Human Rights co-sponsored an event alongside College of Arts & Sciences and Abroms-Engel Institute for the Visual Arts (AEIVA) to present a panel discussion with Dr. Deidra Suwanee Dees (Director/Tribal Archivist – Poarch Band of Creek Indians), Dr. Tina Kempin Reuter (Director – Institute for Human Rights, UAB), Oakleigh Pinson (Guest Co-Curator – Focus IV Exhibition, AEIVA), and moderator John Fields (Senior Director – AEIVA). During their discussion, they addressed the Native erasure from American art and pathways to greater representation.
The discussion began with mention of Manifest Destiny, which were the events that led to the removal of Natives throughout North America. This effort was influenced by the ‘doctrine of discovery’ that painted non-Christians as pagans and, thus, targets of oppression. The Indian Removal Act of 1830 affected tribes throughout the Southeast, namely the Poarch Creek Indians who are the only federally recognized Native tribe in the state of Alabama.
Thus, many works of art in U.S. museums do not include depictions of Natives. In contrast, many paintings of the American frontier include landscapes without people, although sometimes incorporating wildlife, which conveys the message that this land was simply there for the taking. These portrayals also hide behind the altered and destroyed scared sites that were once home to millions of Natives.
Ultimately, the erasure of Native perspectives whitewashes what is to be told and understood. As such, it is imperative these wrongs are corrected through fair representation of Natives in the media and political arena. Recognizing the rights of indigenous peoples not only brings us closer to the full realization of human rights but also prevents history from painting with a broad brush.
As the crowd chanted the words “Reactionary? No, visionary” in synchronization, we could envision the power of community and our passion to create change. Our minds were synced in for a collective purpose and hearts full of warmth and unity. This was at the first For Freedoms Congress in Los Angeles, California at the beginning of March earlier this year. I had the incredible opportunity to attend and bring back home a plethora of inspiration, information, and ideas on using art as a tool for activism.
What is For Freedoms?
For Freedoms is an artist-run platform for civic engagement, discourse, and direct action for artists in the U.S. inspired by American artist Norman Rockwell’s paintings of Franklin D. Roosevelt’s Four Freedoms—freedom of speech, freedom of worship, freedom from want, and freedom from fear—For Freedoms uses art to encourage and deepen public explorations of freedom in the 21st century. Their belief is to use art as a vehicle for participation to deepen public discussions on civic issues through non-partisan programming throughout the country. Hank Willis Thomas, the cofounder of For Freedoms says that “The people who make up our country’s creative fabric have the collective influence to affect change. Right now, we have a lot of non-creative people shaping public policy, and a lot of creative individuals who haven’t or don’t know how to step up. For Freedoms exists as an access point to magnify, strengthen, and perpetuate the civic influence of creatives and institutions nationwide.”
About the Congress
The For Freedoms Congress gathered delegates from all 50 states, the District of Columbia, and Puerto Rico to come together to share their mutual passion of using art as a tool for advocacy and activism. We were honored and proud to represent the Institute for Human Rights, UAB, and the state of Alabama at this nationwide platform. The Congress spanned over three days in the historic city of Los Angeles to celebrate its role as the birthplace and driver of many important artistic-led cultural movements over the decades. The use of remarkable locations such as the Museum of Contemporary Art, Japanese American National Museum, and the Hammer Museum added to the artistic aura of the conference and gave us an opportunity to explore these exciting places.
Over the course of the conference, we got to attend a number of artist-led planning sessions, creative workshops, art activations, and performances on topics ranging from refugee rights to gun violence, indigenous rights to gender equality, and the criminal injustice system to public art policies. In addition, featured townhalls were held on each of the four freedoms that sparked constructive dialogue between the participants.
Culture, Art, and Advocacy
The foundation of all the discussions and sessions at the Congress lies on one fact: culture is a human right. Article 27 of the Universal Declaration of Human Rights states that “everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.” To make this right a reality, activists, advocates, and cultural institutions from around the country came together to share their ideas, foster collaboration, and to create a platform for civic engagement. They committed to keep playing their part in their respective communities to help make this right a reality for all through public action and commitment to the American values of equality, individualism, and pragmatism.
We need to make sure that cultural and social groups are able to express themselves and exercise their right to art in addition to other human rights. The right to art suggests that it should be accessible to everyone and is synonymous with free speech and self-expression. It goes back to having the freedom to speak up for one’s own self, to have representation, and to practice religion and cultural ways free from any fear or want.
Art is a powerful tool to bring communities together and it speaks to people, which is why it can be used in all kinds of fields to foster equity, inclusion, and justice in society. For example, an important aspect that is often overlooked is the importance of art education and its access in our education system. Art education fosters social development, provides a creative outlet, enhances academic performance and intellectual development, and promotes out-of-the-box thinking for students. Brett Cook, an interdisciplinary artist and educator, led a dialogue on community and collaboration to explain how arts-integrated pedagogy can cause healing and tell stories that reinvent representation. He used The Flower of Praxis as the basic model to foster socially engaged art practices with a focus on art education for collaborative outcomes. It starts with preparing the soil by reflecting on personal experiences and moves through the leaves of connecting with others, seeking new understandings, generating critical questions, and critical analysis to grow into the flower of informed action. The process keeps going by reflection influencing action and eventually generates activism and civic engagement.
Making the voices of people more audible by telling their stories through art and narrative can help create a new moral imagination on pressing issues and social injustices. Art can be used to express what human rights mean to a certain group of people. It gives people the right to their own ways and to tell their own stories. The session “Art Stories on Migration” made me realize the potential of art as a tool for advocacy and how it can be used to create a sense of belonging among disoriented populations. It can redefine identity and help answer pressing questions like who belongs to the economy? Who belongs to the healthcare system? Who belongs to the American identity? It can help communities take ownership and build representation in creative ways. The language of visuals activates the aesthetic perceptions of individuals and facilitates a deeper understanding of issues beyond the surface level. Making the stories of refugees and migrants visible through artistic media gives voice to their struggles and highlights their contributions. Responding to the question of suggesting creative activities or solutions in response to the issues of migration, one participant shared their video project in which immigrants re-read the Declaration of Independence to reflect on what those words mean to them, not just historically but also contemporarily. Another delegate suggested using inclusive language and terminology in museums and other public spaces, such as newcomers or people who migrated instead of refugees or immigrants, enslaved people rather than slaves, and First Americans instead of Native Americans. There are also various avenues for advocacy for non-profit organizations and public charities to lobby, advocate, and encourage participation in politics, elections, and other social movements.
One of my favorite sessions at the Congress was the “This is Not a Gun” workshop. It was based on using collective creative activism to highlight the stories of injustices inflicted on the American people at the hands of law and order. Since the year 2000, United States police have “mistaken” at least 38 distinct objects as guns during shootings of a majority of young black American men, none of whom were armed. The participants shaped these mistaken-as-gun objects in clay, giving presence to their form, the human rights violations, and racism prevalent in America today. While carving out these everyday objects like a flashlight, hairbrush, and sandwich, we paid tribute to the victims and had a meaningful conversation around accountability, equity, safety, and social justice in our country. It made us reflect on the racial profiling, police brutality, societal trauma, and the role we can play in addressing these issues by coming together to support our people and our communities.
The takeaway message from the Congress was that art has the potential to make a difference in the social discourse and to create change through public engagement. The For Freedoms Congress built a collective platform for artists around the nation to stimulate public action on pressing national issues. In the words of For Freedoms delegates,
We are a collective of artists, creatives, and cultural institutions. We believe citizenship is defined by participation, not ideology. We are anti-partisan. We use the power of the arts to drive civic engagement, spur public discourse, and inspire people to participate in our democracy.
On Tuesday, October 29th, the Institute for Human Rights co-sponsored an event alongside UAB’s College of Arts & Sciences and Department of Theatre to present indigenous actor, choreographer, director, and educator Michael Greyeyes. During his lecture and discussion with audience members, Greyeyes addressed issues such as the realities of being a stage performer, becoming a director, and indigenous representation in the media.
Greyeyes prefaced his lecture by acknowledging the original caretakers of the Birmingham area, namely the Chickasaw and Muscogee tribes. Following, Greyeyes began to mention a meeting he attended about “conflict”. He emphasized that conflict could elicit an array of emotions such as anger, frustration, and fear. However, he claimed that conflict is necessary, much like fire, because it burns away what is unnecessary.
Born and raised in Saskatchewan, a province of West Canada, Greyeyes moved to Toronto as a young man to work for The National Ballet of Canada. During this time, the company was resurging from its own series of ashes by elevating new leadership and young dancers. After his 4-year apprenticeship that took him around the world and back, Greyeyes had residencies as a performer in New York City, Pittsburgh, and Los Angeles. “Ever the migrant”, he exclaimed.
In Los Angeles, consumed by a restless artistic interest, Greyeyes took up acting. However, as a person of indigenous heritage, he often found himself disillusioned by being typecasted into roles such as “Native doctor” or “Indian lawyer”. Greyeyes then chose to continue his “re-education” by pursuing a Master’s in Fine Arts at Kent State University. Following, he was asked to take on a new role in the performing arts as a director. As a result, Greyeyes has found himself in the position to refine what it means to be a director at his non-profit, Signal Theatre, where he spends considerable time on development and training performers. Thus, the end-product becomes an intimate performance that is suited to resonate better with its audience.
Greyeyes closed his lecture by alluding to our political landscape with the Talking Head’s lyric “Same as it ever was” and suggested that, in times such as this, artistic creativity has the opportunity to challenge new conflicts by rising old memories from the ashes and expressing what we hold dear.
After his lecture, Greyeyes took questions and comments from the inspired audience. One person mentioned that conflict in their parent’s native land of Egypt raised parallels with what indigenous communities have endured through colonialism. Greyeyes responded by mentioning there are high numbers of indigenous soldiers in the armed forces and that he has even played this role on the big screen. Although, the families of these soldiers are the ones who must pick up the pieces. In response, Greyeyes created A Soldier’s Tale which is a passionate dance performance about veterans with post-traumatic stress disorder (PTSD).
He stressed that when non-indigenous people “write us” into the script, their perceptions come out and it generally doesn’t sound right. Thus, he expressed his most acclaimed role by the indigenous community was his True Detective performance as a solider shattered by the Vietnam War. Although, this character was not written in the storyline as a “Native solider” rather an everyday veteran that was given an indigenous perspective by Greyeyes himself. From the ashes to the stage.
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.
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 graverobber, 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 videothat 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 whyquality and accurate representation is so important.
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.
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.
Many of you have grown up watching animated films. They have a special place in our hearts and often cause us to reminisce on our childhood. Animated films have been around for hundreds of years, dating back to 1877 when the praxinoscope was invented. This device would allow you to see an animation by having pictures in a moving wheel. Thus, it would seem as if the pictures are moving due to a slightly different frame. Animations are not necessarily a genre, but instead a film technique. It becomes complicated when trying to determine when the first color animation came out since many films have been lost, although people presume it was around the 1920s. Shortly after, in 1928, Disney developed Mortimer Mouse, which turned into the iconic Mickey Mouse we all know.
Pixar is a well-known company that produces numerous animations and is a branch of the Walt Disney Company. Pixar creates an environment where individuals can work together creatively. In fact, they have a meeting every couple of months called Braintrust, which is where employees can discuss ideas, progress, and struggles with their movies, stressing the importance of honesty. This ensures an environment where people can be flexible in their creativity.
The first short film that Pixar Animation Studios produced was in 1986 and was called Luxo Jr. Due to the use of computer-generated imagery (CGI), it was ahead of its time. What took people by surprise was how the objects could shed light and shadows on themselves, depicting three-dimensional imagery as more alive and realistic. Furthermore, this short film was able to connect to the audience through “emotional realism”, which is where animated characters portray feelings and emotions that resemble human experiences, so we the audience can relate. It was innovative, not just for Pixar but the entire industry. Luxo Jr. went on to win Academy Award for Best Animated Short Film and inspired the creation of many other films such as Toy Story and Cars. As a result, Luxo Jr. was chosen to be preserved at the National Film Registry due to its “cultural, historical and aesthetical significance”. Without this film, who knows where the animation industry would be today.
The third released film, Smash and Grab, tells the story of two robots by the same names who are best friends. Smash’s job is to break rocks and to pass them to Grab who throws it into a furnace. Their routine is the same every day, with an occasional break for playing catch with the rocks. However, the robots cannot leave because they are restrained by a long cable but Smash notices that there is a world where robots could be free and together they decide to escape. This film is unique in that it does not contain any dialogue. However, the theme of friendship is clear.
What Lies Ahead
The films do not end there. In the upcoming year, three more are expected to be released. The first film, Wind, will be directed by a Korean American director, Edwin Chang. The genre is magical realism film about a grandmother and her grandson. The second film will be the first of its kind to have Pinoy characters. Bobby Rubio is the director of Float, a story about a father protecting his son. The third film, Loop, will be directed by Erica Milsom, which will portray a non-verbal autistic girl. These films pave the way for future films by creating narratives that touch on the representation of all people and is not afraid to shed light on stigmatized topics. Furthermore, it creates discussions on the characters and their representation, fatherhood and masculinity, and people with disabilities. The films are not afraid to portray the difficult issues that affect people worldwide. This is just the beginning; these short films can change the industry and people’s perspectives on important topics.
Why it matters
In reference to the Universal Declaration of Human Rights, all humans have equal rights. It is not dependent on one’s gender, race, or religion. People have the right to work without experiencing discrimination and the film industry has a past at doing this. When underrepresented people see themselves in film it creates a chain reaction. Films have the power to shape how audiences perceive the world and it has the potential to instill empathy by breaking through barriers such as race, geography, and gender. Pixar is breaking the typical standards of the animation industry. In fact, their ideas are breaking the mold for people; it has the ability to normalize commonly stigmatized topics. It can lead us to the idea of inclusivity. I leave you with one final message, “To infinity … and beyond.”
Disability rights is an increasingly important issue in our society. According to the U.S. Census Bureau, one in four peoplein this country have a disability. With such a large segment of our population facing a type of disability, it is crucial for the expansion and protection of disability rights. One way in which support for people with disabilities (PwD) can be increased is through the sharing of personal narratives of the experiences and lives of individuals with a disability. Narratives help to educate the public and prevent unintentional bias or stereotypes from causing harm to this community. Giving an individual with a disability an opportunity to open up and share their stories will help empower many of our friends, families, and neighbors and show that every single member of society matters and is appreciated.
Personal narratives are a great way to bridge the gap and inform the general population about disability issues. Oftentimes what people know about disabilities stems from limited education in schools or medical commercials. These outlets tend to focus on statistics and don’t address the issue on a personal level because most of the times they are not consulting an individual with a disability. Even though one in 4 people in this country have a disability, people lack a personal connection that allows them to fully understand the discrimination and ignorance that a person with a disability faces. In fact, it is common for individuals with a disability to have stories where people have stared at them, gawked at them, pointed at them, laughed at them, or even flat out harassed them in public. In all of these cases, PwD are not treated like normal people and are often made to feel ostracized. This disconnect needs to change and this mistreatment of people with disabilities needs to end. If people hear these stories from the viewpoint of a disabled person, then a personal connection is far easier to establish.
A personal connection between both communities is crucial. Empathy and understanding are needed to end fear and uncomfortable feelings when engaging with people with disabilities. It is important for people to realize that disabilities aren’t diseases you can catch. In fact, PwD pose no risk whatsoever to those around them. Listening to PwD talk about their conditions, lives, and how they overcome their disabilities to live a fulfilling life dispels all rumors and falsehoods about disabilities. Stereotypes and prejudice disappear when people see that disabled people are just like them and that disabilities do not define an individual. Each PwD has their own unique identity that is not affected by their disability.
To combat the lack of understanding, misinformation, and stereotypes about PwD and diminish the gap that exists between both communities. It is important to create a safe place for this community. A safe place is an environment where PwD feel comfortable enough to express themselves and share their stories without any fear of judgment or repercussions. Such an environment would make them feel normal and not different from the people around them. It is high time that disabilities were normalized and that PwD are given the same treatment as anyone else. Creating a PwD inclusive space allows the PwD community to strengthen. The benefit of this is that it lets PwD not only advocate for themselves but also to advocate for other people in their community so they might not have to go through the same prejudices.
To create this safe place for PwD it is imperative to promote representation and educate people about individuals with disabilities so that disabilities are normalized in the public eye. Increasing the population’s amount of interaction with PwD is not difficult and is much needed. The earlier this takes place, the better. If society’s youth is brought up surrounded by their peers with disabilities, it would allow both communities to learn a lot from each other. Teaching younger generations how to interact with PwD is a good place to start. Treating these lessons like any other instance where you would educate a younger person about manners and social cues can prevent a lot of uncomfortable situations for people with disabilities. It can also prevent harmful biases from growing in a young child’s mind since their exposure and prior knowledge makes them understand that individuals with disabilities are humans too.
Often times, disability policies have typically been developed for people with disabilities without their direct participation. An element to creating a better environment for people with disabilities is to ensure that they are active in all sectors of the economy. It is a great thing that most public areas are now required to be accessible to PwD. The use of ramps, elevators, sloping curbs, lifts for public transportation, and other methods are required by law to ensure that PwD can navigate through their everyday lives regardless of movement impairments. However, even though these fixtures for creating a more accessible space is mandated by the law, there are many instances where there is only one wheelchair accessible table at a restaurant, or a ramp inconveniently located at the backside of an establishment. It is not only about making space accessible, it is also about how conveniently these resources are accessible to PwD. The reason that disability friendly spaces are sometimes difficult to come by is that people with disabilities are often not the ones designing these spaces. However, having a person with a disability as someone in charge or as a consultant for these issues can help the ball get rolling. So far society has expected people with disabilities to modify themselves to fit in, but having society bend the rules to accommodate people with disabilities can be beneficial to the growth of this community. Therefore, having people with disabilities in charge and active in leadership roles can spearhead this campaign.
Representation is incredibly important for people with disabilities. The marginalization and ostracism of people with disabilities severely hinder their representation in media and pop culture. People with disabilities are the largest minority group in the United States. Yet, the 2017-2018 GLAAD report(report that analyzes diversity in television) found that only 1.8% of characters have a disability making them the least represented minority group in the TV industry. Representation shows the disabled community that they are welcome and belong just as much as any other community. Representation is not only about quantity, but also about being represented accurately without perpetuating any negative stereotypes. More often than not, people with disabilities are depicted in TV shows and movies as these characters that are trying to overcome their disability. It would be more appropriate to show these characters embracing themselves and having a purpose bigger than overcoming their disability. This supports the argument for having more individuals with disabilities as writers, directors, producers, or media consultants. When someone without a disability creates media from the perspective of an individual with a disability, they struggle to paint a truthful picture. This may cause someone without a disability to make assumptions and maintain stereotypes. Having better quality and quantity of disability representation will expose the population to more realistic experiences of individuals with disabilities. This can help generate truthful interchange between communities.
A simple change in the public’s perception of disabled individuals would go a long way in accomplishing the goal of increasing rights and opportunities for PwD. If people can see past the disabilities and focus on the person, then most of the discrimination, awkward moments, and harmful stereotypes facing the disabled community can be resolved. Both communities advocating for change will allow greater access and accommodations for disabled individuals to pursue higher education, enter the workforce, and engage in public events and venues. People need to learn how to respect the rights of these individuals and help them when needed. It is essential to campaign and use powerful narratives to enact greater protections and rights to this community of people. Effectively normalizing disability by tackling these issues head-on can lead to widespread positive changes.
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Representation shapes the way we view the world – media regularly exposes us to perspectives and truths that we may otherwise never experience. Disability is one perspective that abled society frequently avoids. Persons with disabilities are heavily under-represented in media, and existing representations often perpetuate harmful stereotypes. Persons with disabilities are rarely depicted with agency or dignity. More often, disability in media is associated with helplessness, pity, or as a perverted source of inspiration for abled people.
However, times are changing. GLAAD’s Where We Are On TV is an annual report on diversity in television; findings from the recent 2018-2019 television season report a positive trend on representation for people with disabilities. Last year’s report found that 1.8% of all series regulars on primetime broadcast television had disabilities, while this year’s report lists 2.1%. This is only a small increase, and still under-represents the proportion of Americans with disabilities. According to the United States Census Bureau, Americans with disabilities make up between 12–19% of the population (variation in range is due to inconsistent definitions of disability).
But that 2.1% consists of a variety of compelling characters with disabilities. Popular television shows Speechless is groundbreaking for its representations of differently-abled youth. The show is centered around a young man with cerebral palsy, JJ, and his wacky family and friends. Speechless is unique in its approach of wholesome humor to deal with the difficulties of navigating personal agency, inclusivity and the struggles of teen life. Disability is so often viewed from a lens of misery, alienation, and darkness, but this show handles tough topics without demonizing disability. Speechless demonstrates that life with disabilities is much like any other, filled with pain but also joy and laughter. Though this is only one show, Speechless empowers persons with disabilities and sets a better tone for disability representation.
Despite under-representation in mainstream media, people with disabilities have found power in creating a culture of agency within their respective communities. Superfest, a disability film festival, was held in October of this year and showcased a range of perspectives from quadriplegia to cerebral palsy to Deafness. Social media allows persons with disabilities to present their own image of independence and beauty, empowering themselves and others. Advocate/blogger/model Mama Cax is an amputee woman of color with nearly 200k followers on Instagram (@mamacaxx). Cax, who modeled in popular designer brand Chromat’s inclusive Pool Rules campaign, is an inspiration to many women with disabilities who have never seen bodies like theirs proudly and unapologetically represented as beautiful.
Positive strides are also being taken in terms of political representation. Notable people with disabilities in politics include former president Franklin Delano Roosevelt and former Senator Tammy Duckworth. FDR was the first and only United States president who used a wheelchair; Duckworth was the first woman with a disability to be elected to Congress. Currently, no member of Congress has openly identified as having a disability, but the recent midterms did include several candidates with disabilities. Disability Action for America is an organization dedicated to increasing representation for persons with disabilities in the American political arena. Disability Action for American endorsed 16 candidates and raised money to aid their campaigns through the grassroots effort Disability Action Network. With their help, Jennifer Longdon is the first full-time wheelchair user to be elected to Arizona’s State Legislature.
“I think that my own marginalization, my own minority status, gives me a point of view that some of the other candidates might not share. It’s all interconnected. We’ve got to work together to get solutions… It touches education and employment. It touches housing and public transportation and health care and how the criminal justice system works. It touches disability and being LGBTQ, disability and being undocumented, disability and being black or brown, disability and being poor, being uneducated, being whatever else that made you ‘other.” – Jennifer Longdon
People with disabilities are a large and significant community. Increasing representation in media and politics is a critical step towards the acknowledgement of the rights of persons of disabilities at all levels, in all arenas. The examples discussed in this blog are few, but I believe that representation will grow from here. As more people see disability through better representation, disability becomes less distant and more easily understood and accepted. Disability advocates and activists are already growing in number as social justice movements have made efforts towards inclusion and intersectionality. These factors combine to create a positive force for change. Though there are still plenty of barriers to dismantle, disability representation and inclusion in society is on an upward swing.
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.
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
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