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.

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.

The Dynamics of Member States

Photo by Joseph Abua

The United Nations held its 12th Session of the Conference of States Parties to the Convention on the Rights of Persons with Disability, CRPD, between 11th to 13th June 2019. I recently got a graduate assistantship position with the Institute of Human Rights UAB and I was selected as one of the rapporteurs from the institute to attend this prestigious event. Despite being new to the institute, I could not have asked for a better start than going to the United Nations Headquarters, not as a visitor, but a note taker in one of the round table discussions of member states. Although on several occasions, I have always dreamed of visiting the UN Headquarters, yet, I never imagined I would be graced with such an opportunity to experience the spectacle and majesty of the UN as a rapporteur. This has made me realize there is never a dream too big to achieve as all we need to make it a reality lies in our will. 

The United Nations serves as an international framework where the world comes together to identify various challenges, share resolutive ideas, discuss developmental strategies and initiatives, and form stronger alliances. The Conference of State Parties to the Convention on the Rights of Persons with Disability serves as one of the platforms that ensure the needs of Persons with Disability (PWD) are adequately met and catered for. This year’s theme focused on improving and increasing accessibility and inclusion of persons with disabilities into all spheres of the society by ensuring utmost respect to the rights of PWD at all levels. Recent evidence suggests that by developing new and improving existing technological, digitized and ICT oriented innovations, it will better aid and assist PWD and increase their accessibility. Another fundamental area involves promoting social inclusion for PWD, by ensuring their access to the highest level of healthcare services and extensive participation in the cultural life, recreation, leisure, and sporting activities within the society.

Coming from a third-world region, Africa remains in constant need of evidence-based initiatives and mechanisms that will aid her in achieving sustainable growth and development at all levels. Over the years, the continent has continuously experienced several cases of inefficiencies at all levels, with little or no evidence of improvement being recorded. One issue that constitutes a major area of concern is the rights of Persons with Disability. PWD are faced with the worst situations you can ever imagine in most African communities. Despite the strong traditional and cultural heritage Africa possesses which constitutes part of the continent’s beauty and charm, it also serves as a curse especially to PWD. There exist different myths, beliefs, customs and misconceptions that negatively affect PWD till date because some traditions and beliefs cannot be abolished. In some cultures, families with PWD (blind, deaf, dumb and cripple most especially) often use their disability as an avenue to beg for alms, while in other cultures, families with PWD are believed to be cursed by the gods or unfortunate which often leads to the entire family being discriminated and treated as outcasts in the community. Other cultures consider specific disabilities such as cripples and hunchbacks, as items for rituals and sacrifices of all sorts.

Photo by Joseph Abua

Although several steps have been taken by various African governments to eradicate these ridiculous myths and beliefs, more needs to be done in ensuring PWD live normal and meaningful lives like others. One major area of concern that limits PWD in Africa is the poor social and political accessibility and inclusion. During the 3rd round table discussion, several member states discussed anticipated and already existing initiatives and programs that will/already include PWDs, and how they plan to sustain such developments. A few that caught my attention was the discussion by the representative of Zambia, Honorable Olipa Makiloni Phiri Mwansa, who spoke about new legislation known as the Zambia Disability Act which assists the nation to develop in-depth demographic characteristics of PWD. The Sri Lanka representative, His Excellence, Dr. Rohan Perera, spoke about the level the nation has gone in ensuring the successful implementation of the National Human Rights Action Plan for PWD by embedding the “Foundation for Inclusion of PWD” into the nation’s constitution. Morocco’s representative, Ambassador Omar Hilale on the other hand, discussed a framework already being implemented, which strictly focuses on providing vocational training for PWD in vulnerable communities to increase their social inclusion. One nation that has fundamentally developed its accessibility and inclusion rate in Mexico. Her representative discussed the 2018 general elections which were considered the most inclusive election in the country’s history as it ensured PWD had easy access to polling units and were also among the electoral officials during the entire election process. 

In terms of challenges faced by some member states, the Republic of Ireland representative gave an extensive remark about how several nation-states government and public sector is not adequately and structurally designed to meet the needs and demands of PWD and such inefficiency issues need to be addressed by the UN. Also, the first panelist, Ms. Tytti Matsinen (Disability Inclusion Adviser, Finland), spoke about how several communities presently have poor access to standard technologies which further increases the marginalization of PWD. She advocates that individuals, agencies, and organizations who are outside the job market be integrated into making assistive technological innovations for PWD more available and accessible. Finally, the Association for Deaf People (NGO) elaborated the need for parties and agencies to collaborate with PWD when developing technological and ICT programs and products because they possess a good degree of knowledge of their condition. 

This Conference made me understand how much effort the United Nation renders in ensuring member states achieve their desired growth at all levels, but more needs to be done in ensuring certain developmental policies, initiatives, and action plans are efficiently carried out by her members. The CRPD Committee representative spoke about how several member states failed to adopt the Public Procurement Policy which was structured at all levels to achieve greater accessibility standard for PWD. Although he condemned the attitudes of such states, he advised the UN to put in biding sanctions to member states that fail in this regard. At the close of the session, there was a resounding echo of relief by representatives of all member states, each having given meaningful insights and recommendations to various challenges faced at national and international levels. 

I am fortunate to have been selected to attend the conference, especially as a rapporteur in one of the round table sessions alongside several other side events which I may write about in subsequent blogs. Based on my love for policy and advocacy, it truly was a learning process and a developmental experience for me and I would like to appreciate the wonderful Dr. Tina Reuter and the Institute of Human Rights, UAB, for giving me this opportunity to see the world at large. I really had a wonderful experience and I am looking forward to many more field trips as this, and I will always be open in assisting and representing the institute at all levels.

Disability Advocacy and Technology in the 21st Century

Images of The Gang of 19 and “Capitol Crawl” will forever be remembered as pivotal moments in the U.S. disability rights movement alongside international achievements such as the first Paralympic Games in Rome, African Decade of Disabled People, and UN Convention on Rights of Persons with Disabilities. There are those who foster the value-based assumption that picketing, chanting, and public fervor are the appropriate methods to fighting the good fight. However, as digitalization rapidly enters our homes, schools, and places of work, modern technology offers a myriad of new ways to advocate for the rights of people with disabilities, namely social networking platforms and phone apps.

Many of those who engage with social networking platforms have heard of social media subcultures such as Asian-American Twitter, Black Twitter, and Feminist Twitter. These digital subcultures often address sociocultural issues related to their communities and galvanize captivating hashtags, like #BeingAsian, #BlackLivesMatter, and #MeToo, that take the mainstream media by storm. Among, and often intersecting with, these social causes is a growing phenomenon that could be referred to as Disability Twitter. Here, disabled activists share individual narratives coupled with hashtags, such as #AbledsAreExhausting, #DisabledAndCute, and #ThisIsAbleism, as well as address cultural, social, and political issues affecting the disability community through sentiments like #CripTheVote (accessible voting), #DisabilityTooWhite (limited representation of people of color with disabilities), and #SuckItAbleism (plastic straw ban). Such efforts have also been extended to social media platforms such as Facebook and Instagram, further capturing the attention of disability rights to internet users worldwide, generating dialogue and solutions that relate to accessibility.

smartphone. Source: pixabay.com, Creative Commons

With two-thirds of the globe connected by a mobile device, usage of phone apps has become the norm for many people. While many people use such apps for daily tasks and leisure, others utilize these platforms to amplify justice-related causes, namely access for people with disabilities. For example, Wheelmap is a service that allows users to locate and mark accessible places in seven languages. One does so by rating a respective space with a traffic light system that indicates green markings are wheelchair accessible, yellow markings have restricted wheelchair access, and red markings are not wheelchair accessible. Voice of Specially Abled People (VOSAP) is an India-based organization who created a phone app with the same name which crowdsources accessibility data so it can be used to inform community leaders and promote awareness. VOSAP also allows users to make an action pledge that supports people with disabilities so communities can correspond with allied parties. Parking Mobility is another phone app that offers a self-reporting mechanism, although this service allows users to report abuse of accessible parking spots. For partnering communities, such reports are forwarded to local law enforcement and citations are mailed to the registrant of the vehicle. Please contact Parking Mobility to inquire about getting your community involved in this program. There are also many other phone apps designed for personal assistive use such as Be My Eyes (navigation for blind and visually impaired), RogerVoice (subtitled phone calls), Miracle Modus (self-relief for Autistic persons), and Medication Reminder (people with Alzheimer’s and dementia). As a result of these diverse phone apps, there are multiple ways for people to self-advocate as well as spread information about accessibility.

As demonstrated, social media and digital technology have engendered revolutionary ways to address issues salient to the disability community, allowing self-advocates and allies to communicate about current challenges, successes, and resources. Therefore, simply opening your computer, tablet, or phone to navigate these issues, alongside other intersecting causes, shines a brighter light on the importance of disability rights, access, and representation in the 21st century.

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

Disability Rights: A Personal Perspective

* This is a repost from summer 2017

Myself signing for my sorority in front of a section of member nation flags on our last day at the United Nations.

“The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.” When I was hired by the UAB Institute for Human Rights, I never dreamed that we would take the trip to the United Nations for the 10th Convention of States Parties on the Convention on the Rights of Persons with Disabilities. Visiting the United Nations has always been a dream for me, but being able to take part in an international effort to promote disability rights was an unbelievable opportunity to me personally.

Disability has always intersected my life. My sister and I were born with Ehlers-Danlos Syndrome, which is basically a fancy way of saying that all the connective tissue in our bodies are about as stable as a limp noodle. Because of EDS, chronic pain is just a part of my life. I am unable to run, walk, or jump without a joint in my body threatening to dislocate. I suffer from sleep disorders and chronic fatigue along with a host of gastrointestinal issues. It also affects my heart and my autonomic nervous system; I tend to feel like a walking time bomb of anxiety, heart palpitations, and general malaise all wrapped up in a spaghetti-based body. I have lived my whole life without complaining for the most part. Most people in my life don’t know the extent of my disability, or even about it at all. I keep my pain hidden because I do not want anyone’s pity. I continue physically far beyond what my body’s real limits are because I do not want people to think I am lazy or helpless. It takes too much time to explain my disability to everyone I meet, so I deal with my pain with a smile on my face. This is the reality that most people with disabilities face—a life of “oh, I’m so sorry for you!” when they learn of your disability and “why can’t you do this?” when they do not understand your limits. My struggle as a woman with a disability is the reason why the Convention meant so much to me. Before the Convention, I had never in my life been around more than two people with disabilities or ever felt like anyone truly understood what I was going through. Seeing so many other people with disabilities raising their voices, sharing their pain and suffering, and demanding change gave me hope that one day I will no longer feel like I need to hide my disability.

Photo of the team at lunch at the United Nations.
Photo of the team at lunch at the United Nations.

I have always known that having a disability does not mean you cannot be strong and independent. Not being able to walk for long periods does not make me lazy, and my joint instability does not make me weak. I know these things, but sometimes the able-bodied world undermines these beliefs and makes me feel like I will never be good enough. The champions of disability rights who I met gave me such courage to fight those fears. The utter strength and bravery of these people were so encouraging to someone like me. I could see myself in Daniela Bas, the head of DESA and wheelchair user. Ms. Bas has managed to overcome so many obstacles as a woman with a disability yet constantly dazzles people with her charismatic personality and fierce intellect. Ms. Bas gave her knowledge on the importance of international cooperation in dismantling the cross-cutting barriers faced by women with disabilities. Her policy-based approach and political science background gave me hope that one day I could follow in her footsteps. Ms. Mia Farah, of the Lebanese Association for Self-Advocacy, gave me such encouragement from her passion, skills, and independence as a woman with Down Syndrome. Ms. Farah organized one of the most enjoyable and successful side events I attended, despite the challenges that her intellectual disability can bring. Her story of her successes resonated with me because I have always feared my limitations. Mia Farah showed me that limitations that others place on you because of your disability don’t have to define you.

I not only found inspiration during my time at the UN but a wealth of new knowledge as well. Every individual gave new insight on disability rights that I had never considered before. Natalie Draisin spoke on road safety for women and girls with disabilities, and how unsafe roads and transportation can be fatal—an important issue that many ignore when discussing disability rights. I was touched by the story of Flavia Cintra, a Brazilian journalist, whose doctor told her to abort because he believed that tetraplegics should never have children. Ms. Cintra shared how Brazilian mothers with disabilities often lose custody of their children and have their reproductive rights stolen from them through deceptive paperwork. Some wedding officiators even refuse to marry people paralyzed below the waist because they are believed to be unable to bear children. I never knew any of these issues before speaking with Ms. Cintra. As a reproductive rights activist, Ms. Cintra’s story made me understand the importance of including people with disabilities in our activism. All of the stories and experiences that were shared with me hit deeply and gave me such insight into international policies on disability rights.

Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”
Audience view during the side event by IHR and IDPPS teams’ “Making Disability Rights Real: Implementing the CRPD through Regional Cooperation with Lessons Learned from ASEAN.”

The global environment for people with disabilities is harsh, whether one is in Brooklyn, Bogota, or Bangkok. All over the world, people with disabilities deal with compound discrimination, lack of adequate healthcare, limited access to resources, sexual abuse and assault, and the negation of their independence.  Having this opportunity to partake in the implementation of policies on disability rights was genuinely life changing. Viewing the inner workings of the United Nations made me realize that I wanted to make a career in the international nonprofit organizations that work with the UN to effect change. It was incredible to see people from so many different places, all speaking in different languages. I could be listening to a speaker in Chinese, and put on a headset to have it translated live into French, Russian, English, and several more. Watching the sign language interpreters onstage during meetings was so thrilling— not only was it beautiful to watch, it also was critical in making the events accessible to the deaf and hard of hearing. These events made me realize how necessary sign language is to have a successful career in advocacy, because the inclusion of nonverbal people is vital. I will always look back on this trip to the United Nations as the moment when I found my calling. As I have always tried to ignore my disability, I had never realized until now how central disability rights are to my life. Being around such fearless role models brought to life a passion to fight for the rights of women and girls with disabilities around the world.

 

ADA: Civil Rights Legislation for All

* This is a repost from summer 2017

by ABBY ROSS

July 26 1990 ADA Signing Ceremony
July 26 1990, Signing of the Americans with Disabilities Act. Source: United Spinal Association

Today marks the 27th anniversary of the signing of the Americans with Disability Act (ADA). This was a truly groundbreaking piece of civil rights legislation that finally took permanent steps towards ensuring equality for all Americans. The ADA requires private and public entities to not discriminate against people with disabilities, and was crafted with the goal of integration in all aspects of society – employment, social settings, government, transportation, and beyond.

James Weisman, President & CEO of United Spinal Association – a nonprofit dedicated to enhancing the lives of people with spinal cord injury/disorder – has been a disability rights attorney for nearly forty years and had significant involvement in drafting portions of the Americans with Disabilities Act. He sued New York City as a young lawyer over inaccessible buses and subway stations. The implementation of mandatory bus lifts and key subway stations with elevators for wheelchair access were direct results of his lawsuit. This became the basis of the transportation sections of the ADA, and created a precedent across the country giving individuals with physical disabilities access to transportation and thus increasing independence.

Unbeknownst to Weisman, it was just the beginning of his advocacy work specifically related to transportation accessibility for wheelchair users. In the 1990s, United Spinal Association again brought litigation against the City of New York this time related to curb ramps – the corner of sidewalks that are altered to allow wheelchair users and parents with strollers to access the sidewalk from the street. The City was ordered to install ramps on all sidewalks and some twenty years later is still working to fully complete the project. He works on wheelchair accessibility in the taxi and transportation realms with companies like Uber and Lyft. With technology transforming transportation services, he remains committed to ensuring that accessibility is a priority from design to implementation across the transportation industry. Transportation is only a slice of the work that he has been involved in throughout the last forty years as disability rights truly extend to every aspect of an individual’s life. I wanted to hear his thoughts on this important anniversary, forty years of activism as well as reflections on today’s disability rights movement.

Senator Tom Harkin, ADA Sponsor & James Weisman at the NYC ADA25 Disability Pride Parade. Source: United Spinal Association

AR: What is the connection between disability rights and human rights?

JW: Disability rights has always been the bastard child of the rights movement. There is no real “ism” attached. Ableism is the closest thing but that is not definitive. Disability is in every group. There is no country, population or demographic that doesn’t include people with disabilities yet they still can face the hallmark issues of human rights discrimination. Poverty, isolation, inadequate healthcare, underemployment and exclusion are all barriers to independence and equality. People with disabilities face these issues day in and day out.

AR: Where do you see disability rights discussions and action moving in the future?

JW: For a few years, we were making significant progress across the board but with the new administration, we are back to basic rights. Now, the choice to live in the disability community is gravely threatened. Funding for support services that would allow people with disabilities to live independently, work, go to school, shop, go to the movies – live a “normal” life – is being slashed and the impact is tremendous. The proposed changes to healthcare would also have a dramatic effect on quality of life, self-sufficiency and frankly, life expectancy for severely disabled individuals. Simply staying alive is becoming a goal of advocacy again.

Apart from these issues of the day, which will likely always be present in some form, mental health stigma is the next biggest issue and will take the most work to overcome. The complexity of diagnoses and treatments paired with the lack of education and familiarity has created enormous barriers and misunderstanding.

And of course, transportation is always an issue. Innovation must include accessibility. Every new modality should be accessible from inception. – in 2017 it is ridiculous to even consider developing technology that wouldn’t include everyone and consider an aging population in design.

AR: Where have you seen the most progress in disability rights in the last 27 years?

JW: Without a doubt, it is the built environment. Physical accessibility is the easiest to measure, quantify, regulate and learn how to fix. There have been amazing advancements in what is considered normal in terms of building design and features. Automatic entries, lever style door handles, accessible restroom stalls – all things many people don’t even notice but are essential for wheelchair users and others with mobility impairments.

James Weisman and Ian Ruder at United Spinal’s Roll on Capitol Hill Advocacy Event, 2012. Source: United Spinal Association

AR: In your opinion, what is missing from the movement?

JW: Collective identity with the rest of the country. People with disabilities are a tremendous minority group but generally not understood or engaged in the same respect that the able-bodied public is in terms of employment, education, media, advertisers, athletics, etc. Society seems to perpetually need to be re-educated about disability. The image of people with disabilities used to range from heroic to pathetic – that has changed and I believe now ranges from needy to competent but continues to be somewhat one dimensional. For instance, the wheelchair user who is the leading man’s best friend but not the leading man. One in five Americans have a disability. – We all have a friend, uncle, neighbor or colleague with a disability that we consider “our disabled guy” – we know they operate in the world, go to work, school, church, buy groceries and socialize but somehow our personal experiences are not extrapolated out to our experiences with the greater disability community.

To some degree we are missing the next generation of disability rights leaders. Many of my colleagues have been involved in these battles for thirty years or longer when the fights were about the basics – access to buildings, transportation, education. Fortunately, we have progressed since then to more sophisticated issues but there are still barriers on many fronts. The next generation of leaders will need to understand the history of the movement, the landscape of the challenges and the best possible outcomes for the disability community. We have so many bright individuals, disabled and able-bodied, that are doing wonderful work around the country – I am sure that the disability rights movement will be in good hands.

AR: What lessons have you learned in your decades of disability activism?

JW: Good ideas eventually come to fruition. It just takes time. You must keep them on the table, keep talking, keep pushing. Nothing changes if you don’t push. That often means you lose and it is one step forward three steps back but I’ve seen dramatic change in a relatively short time so I know it can happen.

Bias goes away if you expose it. Again, not necessary quickly and not completely, but every little bit helps.

I’ve found that it is extremely rewarding to be a part of this community and social fabric. I have developed extremely meaningful relationships through my work in disability rights. It is a very effect way to mature as a person – to understand the grand scale of the movement and issues as well as the microcosm of individual struggles and concerns.

AR: Finally, why should disability rights matter to every American?

JW: Dependence is expensive. Way more expensive than independence. Dependence is person specific and labor intensive whereas independence often requires only one-time investments. Motorized wheelchairs, building alterations and other assistive technologies certainly aren’t cheap but are essential tools for personal liberty.  The goal of the Americans with Disabilities Act and the goal of all the work that we do around rights is simple – to give opportunity. I always say that the greatest opera ever written or the cure for cancer or other remarkable achievements may be locked in the head of an individual with disabilities who without the services, tools and right to independence will never have the opportunities they deserve to share, create and succeed. Do we want to pay to take care of everyone when the alternative – increasing access to education, employment and opportunities is by far the better alternative?

Disability rights are human rights. People with disabilities are individuals of all ages and backgrounds who are striving to be independent and active participants in society. They are moms, colleagues, wounded warriors, uncles, kids with big dreams, best friends and neighbors. They have families, jobs, hobbies, likes and dislikes and problems and joys. While the disability is an integral part of who they are, it alone does not define them.

 

Abby Ross is the Chief Operating Officer of United Spinal Association headquartered in NYC.

James Weisman was the General Counsel of United Spinal Association for 35 years prior to becoming President & CEO in 2015.

CRPD: Implementation for the people, by the people

** As the IHR and other sponsors prepare for the “Symposium on Disability Rights,” the next few weeks will highlight some posts from the past as well as feature new posts written to provide some background into the various panel focuses.  

* This is a repost from summer 2017.

a picture of the CRPD CoSP banner outside of the UN
Source: Ajanet Rountree

The UAB IHR team had the opportunity to participate as rapporteurs in the Conference of State Parties (CoSP) annual meeting at the United Nations headquarters in New York City. In accordance with Article 40 of the Convention on the Rights of Person with Disabilities (CRPD), CoSP consists of convention signatories responsible for the implementation of the Convention. This annual meeting is the “most diverse international disability meeting in the world” because it brings together UN agencies, non-governmental organizations, human rights institutions, disabled persons organizations (DPOs), and civil society.

Estimated at 1 billion, persons with disabilities are the largest minority worldwide, facing considerable marginalization in every day life. The CRPD is the first human rights treaty of the 21st century, with the expressed purpose of ensuring that “all persons with all types of disabilities…enjoy all human rights and fundamental freedoms”. Adopted by the United Nations General Assembly in December 2006, the CRPD is the first treaty “open for signature by regional integration organizations” (app) who exercise the social development dimension by changing attitudes and approaches to persons with disabilities.

The UN Enable website designates the mandate of CRPD as “the movement from viewing persons with disabilities as “objects”  of charity, medical treatment, and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights, and making decisions for their lives based on their free and informed consent as well as being active members of society.” In other words, CRPD focuses on the human being rather than the disability, and its implementation teaches the world to do the same. As of November 2016, 168 states and the European Union ratified the Convention; the United States has not.

The CRPD presents a disabled perspective to an able-bodied norm. Through the CRPD, persons with disabilities– disempowered through invisibility that is rooted in an able-bodied world, which often forgets their existence—benefit as their human rights infuse with other conventions, standards and norms of treatment.

a map of the nations that have and have not ratified the CRPD
Source: UN Enable

Janet Lord argues that the language utilized in the CRPD reinforces the need to reframe disability as a contribution to society, rather than a hindrance. Pointing to the American Disability Act (ADA) as a stepping-stone to the CRPD creation, she makes a clear delineation that CRPD is not an international version of ADA. “[CRPD] provides a framework for the development of disability rights in countries that is, in large part, inspired by the principles and concepts found in the ADA—nondiscrimination, inclusion, autonomy, human dignity. Like any other human rights treaty, the CRPD seeks to ensure that the human rights to which all are entitle are actually implemented for persons with disabilities.” She hones in on two essential themes of the CRPD: non-discrimination and employment.

First, non-discrimination is all-inclusive as defined in Article 2 and outlined in Article 5. “Discrimination on the basis of disability means any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights and fundamental freedoms in the political, economic, social, cultural, civil or any other field. It includes all forms of discrimination, including the denial of reasonable accommodation.” Akiko Ito, Chief of the Secretariat for the Convention on the Rights of Persons with Disabilities, insists the need for at least two perspectives, disabled and gendered, when mainstreaming disability as a measure to counter discrimination. Unfortunately, the layers of discrimination are not limited to two perspectives; therefore, it is necessary to include race and/or ethnicity, given the intersectionality of an individual life.

Second, barriers to employment reinforce exclusion and marginalization. While employment barriers differ depending on the disability, the overarching concept lies in accessibility. As an able-bodied person, I take accessibility for granted. Consider how a wheelchair user gets to work if there is not access to a bus, cab, or car that is accessible; or how a visually impaired person gets information from the internet, if there is no voice-over technology. Article 27 of the CRPD challenges and demands the labor market to be “open, inclusive and accessible…by taking appropriate steps” for persons with disabilities to participate and enjoy the right to work. UN Enable reports that there is difficulty in obtaining data on persons with disabilities, specific to employment; however, here some of what we know:

  • In the US, a 2004 survey reported that 35% of persons with disabilities have employment when compared to 78% of the rest of the population.
  • China has an estimated 83 million persons with disability – that is 6.3% of the country’s population
  • In Ireland, 37% of persons 15-64 have a disability and are employed
  • Thailand states that 1.3 million of the 4.8 million persons with disabilities are working age
  • 70% of Russia’s disabled population is unemployed

The rights to employment and non-discrimination fall into the categories of economic and social affairs. While CoSP ensures the practical application of the CRPD on the local level, the Department of Economics and Social Affairs (DESA) advises, develops, and oversees policy creation and the implementation of CRPD on the national level. Ito explains, “DESA works to support the development pillars of the United Nations – peace and security, and human rights.” CRPD and its implementation align with the 1945 UN Charter that seeks to identify progress in economic and social development, and promote human rights through the creation and maintenance of a peaceful and prosperous world.

The role of civil society is imperative in the implementation of the CRPD. Article 33 makes allowance that persons with disabilities and their organizations are involved and participate in the monitoring process; this outlet is CoSP. Civil society participation is uncharted territory as no other human rights treaty acknowledges the advocacy, accountability, and the representation of NGOs. By recognizing the mandates and positions of NGOs within communities and around the globe, CoSP is striving to ensure the full inclusion of persons with disabilities into an accessible and accepting society. To be clear, the implementation process is complex, difficult, and far from over. Fortunately, having persons with disabilities led and dominate discussions, CoSP represents a microcosm of dedicated innovation and a relentless pursuit of excellence as they collaborate to create, maintain, and reframe equal representation of human rights through participation and partnership.

Over the course of this week, the team will share personal experiences and takeaways from this incredible week that included the official launch of the CRPD app and sharing of Making Disability Rights Real in Southeast Asia by Dr. Derrick Cogburn and Dr. Tina Kempin Reuter.

 

 

The United Nations and Psychosocial Disabilities

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

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

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

 

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

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

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

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

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

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

Recap of Using Digital Storytelling to Promote Human Rights: The Experience of Disability Advocates

co-authored Tyler Goodwin and Nicholas Sherwood

a picture of Dr. Trevisan presenting
Photo by Tyler Goodwin

On Wednesday, October 11, 2017, the UAB Institute for Human Rights sponsored an event titled: “Using Digital Story Telling to Promote Disability Rights.” This event featured Dr. Filippo Trevisan, Assistant Professor of Communications at American University in Washington, D.C. Dr. Trevisan is a disability rights advocate whose research features the use of technology to enhance accessibility for persons with disabilities. He is the Deputy Director of the Institute on Disability and Public Policy at American University, and an accomplished author, who released his book, Disability Rights Advocacy Online, last year. Dr. Trevisan’s presentation attempts to answer the question of how advocacy effectively inspires policy change for marginalized populations- most notably, for the disabled community.

Disability Rights

When the United Nations codified the Convention on the Rights of Persons with Disabilities, disability rights were first established at the international level of governance. This Convention is notable for its inclusion of actual persons with disabilities in the creation of this legal document, and for good reason. Persons with disabilities have long had to self-advocate for their rights, and the potency of grassroots efforts for disability rights distinguish this rights movement from other human rights movements. Dr. Trevisan, through the lens of information and communication technology, aimed to understand how formalized rights were impacted by the grassroots efforts of persons with disabilities.

Dr. Trevisan spoke of how Information and Communication Technologies (ICTs) have significantly impacted the world of disability rights. The United Nations Educational, Scientific and Cultural Organization (UNESCO) says that ICTs have allowed persons with disabilities to “enhance their social, cultural, political and economic integration in communities by enlarging the scope of activities available to them.” ICTs have promoted self-advocacy by allowing persons with disabilities to directly participate in any number of activities by directly getting their voice heard- middlemen are no longer required for persons with disabilities to get their issues out into the world. By surpassing several links in the communication process, the voices and narratives of persons with disabilities are more authentically communicated to policy makers and all levels of governance: local, regional, national, and international.

By skipping these ‘middlemen’, the effectiveness of a message (such as advocacy for disability rights) is more prominent, and the intended effect (policy change) is more directly linked to the advocate. According to Trevisan, two main communication styles are used by disability rights advocates to persuade policy-makers.

Emotional Appeal Versus Rational Arguments

Breaking down the rhetoric used by disability rights advocates, Trevisan elucidated on two primary forms of persuasive messages: messages appealing to emotion and messages appealing to reason. Emotional appeals typically feature personal narratives, eliciting feelings of empathy and sympathy by the receiver of the message. By contrast, rational arguments (i.e. appealing to reason) offer evidence-based arguments in support of policy change. A challenge of human rights advocates (in this case, disability rights advocates) is deciding which, or in what combination, of these persuasive tactics is most likely to achieve the desired outcome.

Historically, policy-makers have favored (or been more susceptible to) appeals to reason, as evidence-based arguments offer a more sound and predictable argument for policy change (or lack thereof). However, upon analyzing cases in the United Kingdom and United States, Trevisan documented a noticeable modal shift in successful argument tactics. Instead of favoring rational appeals, policy-makers are starting to respond and succumb to emotional appeals; this change is most clearly documented in policies related to persons with disabilities. This has huge implications for advocacy efforts and policy-makers alike. Bygone are the days where statistics and figures hold greater weight than personal narratives and stories. Perhaps we do indeed live in a “post-fact world” (though hopefully not). The question now becomes: why are emotional appeals more effective than rational arguments? And how can we marry these two approaches to achieve both: 1) successful persuasion of policy-makers to codify human rights and 2) create the emotional appeal from a sound and practical argument?

a picture of social media icons as flowers indicating the growth of social media
Growing Social Media. Source: mkhmarketing, Creative Commons

The Power of Stories

The answer to the first question lies in the power of story; Trevisan argues the impact of personal story-sharing in disability rights advocacy cannot be overstated. The importance of persons with disabilities telling their personal stories has proven to be very effective when it comes to advocating for their rights, and Dr. Trevisan mentioned two critical components to story telling: 1) the voice of the person telling the story, and 2) the storyteller feeling his or her voice is heard. Dr. Trevisan states his research led him to find “individuals [with disabilities] are now able to participate in crowd-sourced campaigns, and they want to.” He goes on to say persons with disabilities generally feel authentic in their narrative-sharing and the significant strides in disability rights implementation (for example, the CRPD) shows their voices are being hear.

Persons with disabilities have been particularly effective in their use of crowdsourcing- the virtual participation in efforts such as rights-advocacy. While crowd-sourcing has been a great way to get stories out into the world, the particular mixture of rational vs. emotional components is up for debate. How narrow should the stories be? If someone has to edit these stories, who should it be and what gives them the right to do so? Should there be no editing of the stories? If not, what if the stories do not pertain to the cause? Is it right to cut out someone’s story that they want to tell? How can we (consumers of information) be sure we are receiving an authentic and genuine message from a credible source (especially in a “post-fact world”)?

Dr. Trevisan’s cunning research of story-telling in disability-rights advocacy suggests the paradigm of successful policy change is shifting: from rational appeal to emotional connection, from the presentation of hard facts to the telling of personal stories. Moving forward with this new knowledge, human rights researchers and advocates must find a way to marry objective reality with the subjective story of humanity.

 

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