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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My experience at the CoSP10

by MIRANDA GRAY

a picture of the inside of the UN General Assembly Hall
Inside of the UN General Assembly Hall. Photo by Tyler Goodwin

As I reported to the United Nations for my first day of actual volunteering, I felt enwrapped by excitement, anticipation and fear. Working at the United Nations had been a goal of mine for years, and after a tour of the UN just a couple of months before, I left telling myself that my long nights of studying and research for my masters in the anthropology of peace and human rights would be worth it. That May morning, when I walked into the UN, with a purpose, not just as a visitor, I felt important and like I was on my way to making it. At the end of the experience, however, I had other career goals in mind.

Personally, one of the most memorable parts of the whole experience came on that first morning, when my coworker and fellow graduate student, Ajanet Rountree, made me march onto the floor of the General Assembly Hall to find the volunteer coordinator, Fred Doulton. The security guard told me when I walked in that I strictly was to stay off the floor, as those spots were reserved for state representatives and UN workers. Ajanet spotted Fred, and her confidence led me to where I needed to be. Stepping onto the plush green floors of the General Assembly was electrifying; I simultaneously felt like somebody, as tour groups walked across the upper floor, and nobody, as I walked past ambassadors and other state representatives. I am particularly thankful for that moment and the ability to witness such an intricate and important session.

During the opening session when states stated their progress since the last conference, I became aware of the many moving pieces and challenges states must grapple with in advocating for the rights of persons with disabilities. Lack of awareness and resources as well as increased social exclusion have all impeded progress in protecting and ensuring rights of persons with disabilities. Many nations implored the other members of the conference for more concrete data on persons with disabilities in order to better tailor advocacy measures to persons with disabilities. However, the second session I took notes on truly opened my eyes to the other pieces of the advocacy puzzle, in addition to states, and tempered my opinion of a United Nations career as the ultimate goal for a human rights worker.

My second volunteer session incorporated statements given by several nongovernmental organizations. These organizations seemed to have specific goals and methods of implementation that might drastically improve lives of persons with disabilities. I realized that a great deal of the accomplishments that states reported on were often directly because of the work of NGOs. I previously thought of work with NGos as stepping stones to the ultimate career with the United Nations. And while working at the United Nations is still a career goal of mine, I have come to realize that meaningful necessary work is not a stepping stone, but rather the ultimate career in and of itself. When I heard NGO workers talk about the most important aspects of rights of persons with disabilities, I left feeling personally challenged to advocate for others in an inclusive manner that promotes full participation and addresses the impact of multiple discriminators on persons with disabilities, specifically women and children. I realized that day that no matter the name on the door, doing good work for people would always be admirable.

Before volunteering at the United Nations’ Conference of State Parties on the Rights of Persons with Disabilities, I do not think rights of persons with disabilities were at the forefront of my mind of imminently pressing human rights issues.  My previous studies have mostly focused on the rights of persons in areas of conflict, and those studies more specifically have been focused on the right to life. But following my experience volunteering at the Conference of State Parties on the Rights of Persons with Disabilities, I left having learned that any study on human rights violations should be inclusive of the particular violations persons with disabilities face. I left feeling a call to action, to advocate for persons with disabilities by listening to persons with disabilities, hearing their opinions, and acting accordingly. As I returned to UAB and Birmingham, I operate with a heightened sense of the lack of accessibility in our city, and I feel equipped with the drive and tools afforded me through my week at the UN to do something about it.

 

The CRPD: Path to Inclusion

UN General Assembly. Photo by Aseel Hajazin.

It has been almost been two months since the Institute for Human Rights at UAB has gone to the United Nations and the experience is still so surreal. I have always dreamed about one day working for the United Nations; I just did not realize that the opportunity would come so soon. This was also my first time in New York and actually in a lively city, so I was also really looking forward to that experience. Our team was not only going to the UN for a tour but to work. As a rapporteur, I took notes and summarized the comments made by the participating countries during the general debate and concluding conference.

Even though every delegate of their respective country has meaningful contribution to the conference, the countries that stood out the most to me was my home country of Jordan, and my host country, Saudi Arabia. In the Arab World, persons with disabilities are unfortunately sometimes invisible members of society. The conference changed my perspective on the inclusion of Arab people with disabilities in their home countries. I was fortunate enough to interact with many Arabs with disabilities in the conference and listen to their experiences. The statements that stood out to me expressed feelings of relief due to an acknowledgment by their governments; noting a significant improvement of inclusion of persons with disabilities in society, through the implementation of special programs focusing on the education and recreational needs of people with disabilities that were not present 20 years ago.

When I was 12 years old, I visited a school called The Lady of Peace in Amman, Jordan. This school focuses on providing both the educational, recreational and psychological needs of all people with disabilities. I mentioned this to one of the fellow Jordanians participating in the conference, and she knew exactly which school I was talking about! She updated me on the school and let me know they have become very involved in advocating for the rights of people with disabilities by attending conferences throughout Amman. They are not only focusing their attention on providing these services but also promoting disability rights as human rights. She also highlighted that even though the school is a Christian led organization, both Muslims and Christians respectfully come together to help organize fundraisers to continue help the school keep it functioning. The Lady of Peace continues to have a strong sense of unity and community, even after all of these years.

For me, the most impactful moment of the whole conference were the comments made by the delegate of Iraq. They highlighted how global factors need to begin focusing on people affected by disabilities due to war and violence. The delegate mentioned how before violence and war, many of the refugees were not previously disabled. Global assistance and humanitarian efforts need to focus on helping these people adapt to their new situation by providing both technological and psychological assistance and support. Before the conference, the concept of disability due to violence never crossed my mind, and after the delegates remarks I experienced an “ah-ha” moment. The media, when reporting of refugees, focuses on the health and shelter of refugees but not once have I personally heard the media report on the struggles faced by people with disabilities. Initially, I was disappointed in myself for overlooking this population. I now realize that I need to take advantage of my awareness of the reality of disability and war, advocating for awareness to other members of society.

My favorite moment of the whole conference were the comments made by the delegate of Mexico. She was very vibrant and uplifting and reminded members of the conference that we need to change the way we portray people with disabilities. We as a society discuss disability we need to make it fun, exciting and in her words “sexy.” I enjoyed her remarks because she reminded us that we do not have to remain serious all the time when discussing disabilities, and if we want members of our society to care about disability rights, we need to approach the topic in a more engaging and optimist manner.

Overall, this experience was humbling. Throughout the conference, I felt surrounded by love, acceptance, and people who want to make a genuine change in the world. I learned so many different concepts from how the UN operates to what members of our society can implement regarding policy to influence change and real results. I hope one day to have the opportunity to return to the UN and work for them. Thank you to Dr. Reuter for this opportunity, and thank you to my team for making this trip so memorable. I will never forget this opportunity and will definitely cherish it forever.

 

A 29th Floor Perspective

 

1st Ave from the 29th Floor of the UN
1st Ave from the 29th Floor of the UN. Photo by Ajanet Rountree.

The United Nations (UN) Conference on State Parties (CoSP10) experience began on the 29th floor for me. I say this because I lived in New York City and toured the UN on a couple of occasions. Additionally, living a life that is inclusive of persons with disabilities is in my wheelhouse. A friend and mentor utilizes crutches to help him walk because an accident, when he was younger, took the full use of his legs. Cancer took the use of B’s legs when she was a baby, and a motorcycle accident left my uncle paralyzed from the waist, making them both wheelchair users. I lead with all of this to say that making room in my world for persons with disabilities is something I have done for decades. My familiarity, in a sense, is akin to the knowledge gained by a couple of tours of the UN lobby and gift shop. Therefore, walking into CoSP10, I was prepared or so I thought.

I had never been on the 29th floor. The perspective is much different up there.

The Division of Economic and Social Affairs (DESA) is located on the 29th floor of the UN. The DESA team is responsible for both the economic and social affairs of persons with disabilities for all the UN member states as directly related to the Convention on the Rights of Persons with Disabilities (CRPD). They write and disseminate policies and ideas to the member states as suggested modes of implementation. Each policy and suggestion lies within the UN mandated Sustainable Development Goals (SDG) which is an extension of the 1945 UN Charter. SDGs are the 17 goals all member states, through collaboration, seek to achieve by 2020 as a means of ensuring “no one is left behind” while honoring the Universal Declaration of Human Rights (UDHR) and CRPD. Sitting in the conference room, I am inspired by the opportunity but not fully awake to what is about to take place.

Enter Daniela Bas.

Bas is the DESA director. During her chat with us, she disclosed a couple of points that stand out to me. First, the UN, as an employing entity, is beginning to put into action many of the policies and measures, tasked to member states for implementation. Most specifically, employing persons with disabilities in key leadership positions of which she is one. Second, the UN is an organization led by human beings seeking to do the right thing. With full acknowledgment, she reminds that the UN is not perfect but that the process of coalescing 196 backgrounds, traditions, religious affiliations, and attitudes to make significant strides at securing human rights and making the world more peaceful, is an accomplishment. Lastly, when compared to men and boys, and those who are able-bodied, discrimination against women and girls with disabilities doubles, and even triples if they belong to a minority race or class in their country. This last point, triple discrimination for women and girls with disabilities will become a recurring theme in the conference for me. The harsh reality of this fact remains an echo in my soul to this moment.

Confrontation with another person’s truth requires an adjustment to what is known through experience and education, and assumed through familiarity.

On the floor. Photo by Ajanet Rountree

I study and view life and the world with a gendered perspective in mind. I look for the role of women, our impact on families and societies, and our visibility and invisibility when it comes to equality. I am aware of the trials of living life at intersections. Intersectionality complicates because discrimination is complicated. I believe there is a temptation to separate the intersections so to obtain a solid understanding; however, it is in the attempt to separate that understanding is lost. Gaining a complete understanding of the dynamics of discrimination requires a holistic not segmented perspective.

Girls, irrespective of ability, are not as valuable or visible in many societies as boys are. Nora Fyles, head of the UN Girls Education Initiative (UNGEI) Secretariat, asserts invisibility is the fundamental barrier to education for girls with disabilities. She confirms this assertion when explaining the search for partnership on the gendered perspective education project by stating that 1/350 companies had a focus on girls with disabilities. For Bas, the failure to identify girls and women with disabilities is a failure to acknowledge their existence. Subsequently, if they do not exist, how can we expect them to hear their need? She suggests addressing crosscutting barriers. Leonard Cheshire Disability (LCD), in partnership with the World Bank, UNICEF, and UNGEI, hosted a side-event where they released their findings regarding a lack of inclusive education opportunities for girls with disabilities. Still Left Behind: Pathways to Inclusive Education for Girls with Disabilities sheds light on the present barriers girls, specifically those with disabilities, experience when seeking an education.

Article 26 of the UDHR lists education as a human right. Bas believes if knowledge is power, and power comes from education, the fact that 50% of women with a disability complete primary school and 20% obtain employment, reflects social and economic inequality. Ola Abu Al-Ghaib of LCD emphasizes policies, cultural norms, and attitudes about persons with disabilities perpetuate crosscutting barriers for girls with disabilities to receive an education. She concludes that schools are a mirror of society. In the absence of gendered sensitivity, boys advance and girls do not. Every failed attempt to address and correct the issue is a disservice to girls generally, and girls with disabilities, specifically.

It is imperative to remember that the spectrum of disability is multifaceted. Most people recognize developmental and physical disabilities like Downs Syndrome, Autism, visual and hearing impairment, and wheelchair users, but fail to consider albinism and cognitive disabilities as part of the mainstream disability narrative. Bulgaria is focusing on implementing Article 12 of CRPD regarding legal capacity. Legal consultant and lawyer, Marieta Dimitrova explains that under Bulgarian law, only reasonable persons have the right to independence; therefore, persons with cognitive disabilities receive the “unable” descriptor under assumption they are unable to reason and understand, thereby placing them under a guardian. Guardianship removes the right to participate in decisions regarding quality of life, which is a deprivation of liberty. She resolves that although full implementation into law awaits, stakeholders are seeking renewal in the new government because pilot projects have proven that an enjoyment of legal capacity in practice yields lower risk of abuse, changed attitude within communities, personal autonomy and flexibility.

Not all disabilities result from birth or accidents. War and armed conflict factor into 20% of individuals maimed while living in and fleeing from violence. A lack of medical access leave 90% of maimed individuals permanently disabled. Stephane from the International Committee of the Red Cross (ICRC) submits that for refugees with disabilities, access to essential services can be difficult on the journey and in camps, but also for those who are unable to flee. He infers a “double disability” inflicted upon refugees with disabilities: first as a refugee, and second as a person with a disability. Human Rights Watch advocates that refugee camps produce a humiliating and degrading existence for persons with physical disabilities because the “tricks” employed prior to arrival in the camps, are no longer applicable as wheelchairs sink in the mud and crutches break on rocky grounds. The Lebanese Association for Self-Advocacy (LASA) reports the underrepresentation of women and girls is significant when receiving information and access to assistance.

In a refugee simulation seminar, LASA informed that on the ground, confusion is high given that humanitarian organizations do not consult with each other, making communication difficult and non-supportive. For families with a person with a disability, nonexistence communication means a prevalence to fall victim to violence and harassment. Jakob Lund of UN Women divulges that humanitarian aid can be ineffective for women with disabilities, while Sharon with OHCHR suggests a clear dichotomy between the rights of the able-bodied and the rights of persons with disabilities holds central to the ineffectiveness. At the core of a lack of communication and accessibility is invisibility. Stephane concludes that there is an obvious need for a necessary and systematic retraining specific to educating others on how to see the invisible.

a picture of Chinatown, NYC and Brooklyn Bridge
Chinatown, NYC, and Brooklyn Bridge. Source: Madhu Nair, Creative Commons

The process of inclusion and equality relates directly to the decision to acknowledge a person’s existence. Retraining the mind to see any human being with a physical disability takes decisive action so I put myself to the test. First, I thought of all the famous women with a physical disability I could think of, and arrived at about six, including Heather Whitestone and Bethany Hamilton. I then googled celebrity women with disabilities which yielded a Huffington Post piece that identified Marlee Matlin, Frida Kahlo, Helen Keller, and Sudha Chandran as 4/10 “majorly successful people with disabilities”. I had Marlee Matlin and Helen Keller. What is more interesting is that I arrived at seven when naming men with physical disabilities. Here is the point: society is not inclusive of persons with disabilities if we have to strain our brains to remember the last time we sat next to, opened the door for, ate a meal with, or saw on the television/movie screen/church platform a person who did not look like us physically.

Perspective changes everything because perspective is everything.

Accessibility: A Paradigm Shift

a picture of the inside of the UN General Assembly Hall
Photo by Tyler Goodwin

I was given the opportunity to work as a rapporteur for the Conference of State Parties to the Rights of Persons with Disabilities (CRPD) at the United Nations in New York City. As a rapporteur, it was my duty to report on each event and assembly that I attended by drafting a summary of what took place respectively. I was able to attend the opening ceremony in the General Assembly Hall, which is where the meetings of the 193 Member States originally take place; an event on data mining, which is when one uses a large database to come to conclusions, and the importance of technology for persons with disabilities, where Dr. Reuter presented her research; a Roundtable Debate, where each party was able to ask questions and address any concerns they may have; and finally, a panel discussion with members, one of which was Dr. Reuter, who had the opportunity to present their findings from their research and answer questions from the audience.

When we were getting our duties and learning our roles, the Director for the United Nations Department of Economic and Social Affairs (DESA) Division for Social Policy and Development, Daniela Bas, came in to speak to us. It was a humbling experience, as she made an effort to get to know everyone in the room. I was also able to meet delegates from Canada, Zambia, and New Zealand. I remember Zambia’s representatives standing out specifically, for many reasons. Zambia is a country in southeastern Africa, where resources are limited. However, with the resources they have left, they have made efforts to allocate some of them to persons with disabilities. They also reported on their progress in implementing the CRPD, and it claimed to have many positive strides despite the fact that there is still much to be done.

During the Roundtable Debate, the issue of travel complications was raised. It was an eye-opening moment for me personally, as someone who loves to travel. I learned that a lot of individuals and families must plan business trips and vacations around accessible places and there will more than likely still be difficulties during their travels due to accessibility issues. Catalina Devandas Aguilar, who is the Special Rapporteur on the Rights of Persons with Disabilities then spoke on how there must be a greater political commitment to combat this issue. As the Special Rapporteur, she is trusted to be impartial and knowledgeable when she reports on a country’s trials. She was not speaking of a certain country in this case, but what she had examined across the globe. She also called for more respect, dignity, and a gender-equal approach when concerning persons with disabilities and the obstacles they face. It is important for all of these prongs to be met for persons with disabilities as they are seen as lesser or incapable at times. In reality, it is not feasible for persons with disabilities to accomplish something due to inaccessibility.

a picture of the stone wall outside of the UN
Photo by Tyler Goodwin

Prior to my week of working for the United Nations, I had a vague idea about how it was operated. I assumed it was similar to a business, but on a much larger scale. I imagined that the employees, directors, and delegates would be strictly focused on the Conference. I now have a small, but a clearer understanding of how the United Nations works. Those mentioned were certainly focused, but they were open to chatting and encouraging to others. Ms. Bas went out of her way to come speak to us, and the employees that I sat beside during the events were extremely welcoming and helpful. They asked about who I was, where I am from, and what I hope to accomplish one day. I expected to have to aggressively network to get to meet higher-up employees, but they were the ones who made the efforts to get to know me and the rest of the team. It changed my perspective of the United Nations in a positive way and fanned the fire inside of me to want to work there more. I was unsure of what a day at the United Nations would be like for an employee, and I only received a small glimpse of it, but I am thrilled to have gotten the experience.

Throughout the course of the Conference, I was able to see the importance of a global approach to handling persons with disabilities’ rights and implementing the CRPD. When it comes to a community so large and diverse, the United Nations must act cohesively to reach the 2030 agenda of sustainable development, and this Conference was a testament to their commitment. Doing so would ensure the world would be more accessible for all and lessen the issues faced by persons with disabilities.

This opportunity was heavily impactful for me. I was introduced to the world of the United Nations, and the humanitarian world outside of it. I met people who are involved in advocacy and fighting for rights around the globe, whether they are employed by the United Nations or not. I always envisioned myself being truly fulfilled by working for the United Nations alone, but I learned that there are many different outlets to accomplish the types of things I want to one day. It is still my end goal to be employed by them, but I have realized that I can have a fulfilling career. I am beyond grateful to Dr. Reuter for her research and advocacy, as she is truly making a difference. I am also grateful to have had her bring me along to experience the United Nations from the perspective I was given.

Reconciling Political Spectacle and Genuine Empowerment

a photo of Nick on the UN floor
Source: Nicholas Sherwood

Disability is widely defined. Disability is typically thought of an impairment (though this term is quickly falling out of the common lexicon) of the physical, cognitive, intellectual, developmental, or other types of day-to-day functioning in an individual.  This convention marked the 10th anniversary of the formal UN codification of the international rights of persons with disabilities, and this year’s programmatic focus was on the inclusion of persons with disabilities in decisions affecting their lives.  In other words, persons with disabilities worked side-by-side with UN representatives and other officials to comment on the progress of their rights.  UAB’s Institute for Human Rights, in conjunction with American University’s Institute on Disability and Public Policy (IDPP), presented research and policy direction.

This was my first time to visit the UN. Actually, my first time in New York City.  Working with the United Nations has been a dream of mine since I was a young boy. I have dreamed of seeing the member states’ flags waving in front of the tall Manhattan skyscraper, hearing dozens of languages and dialects spoken, and of contributing to the founding principles of human rights and international governance.  From inside the UN, the world is a much more complex place than the dream I had as a child.  I will elaborate further.

As a rapporteur, I notated the official dialogue between state parties on their progress in implementing the Convention on the Rights of Persons with Disabilities.  I heard and transcribed over 80 state parties’ efforts to include these persons in the local, regional, national, and international conversation on how to foster a more inclusive world for persons with mental and physical differences. The wording here is intentional because I am choosing not to see persons as ‘disabled’ but with features different from my own; thereby, reframing the perception and honoring their right as a human being first, rather than a disability.

In some cases, the effort was fantastic while others left must to be desired. Australia, in particular, has had tremendous success reaching out to persons with disabilities, especially in aboriginal tribes. NGOs publicly name other states whose efforts are praiseworthy.  Public addresses, which are by nature political, served to motivate other ‘lacking’ states to imagine and implement faster, more effective, and more inclusive policies for persons with disabilities.  The political game was on full display.  Some states simply paid lip service to the CRPD.  One state in particular, infamously known for blatant human rights violations bordering on genocide, implored the audience their commitment to human rights and their government’s special attention to persons with disabilities.  States with an abhorrent human rights record, upon delivery of their ‘efforts to promote the rights of persons with disabilities’, received cold eye rolls and scoffs from other diplomats.  In the official meetings of the State Parties, no love was lost between states who actually adhered to the Convention and states who only signed and ratified for political purposes.  The political optics were on full display, and attentive audience members could typically discern authentic investment in the CRPD and inauthentic investment.  This political game was in stark contrast to the side events present throughout the convention.

The official State Meetings of the CRPD take place simultaneously with presentations on specific issues to persons with disabilities and solutions created by NGOs, states, and members of civil society.  These presentations, similar in execution and functioning to an academic research conference, disarmed the political machine of the UN in favor of real, boots-on-the-ground- efforts to include and empower persons with disabilities from across the globe.  Throughout the three days the conference took place, I was awestruck by the tenacity and ingenuity of disabled and non-disabled persons alike in efforts to eradicate the ‘ability barrier’ throughout the world.  I heard presentations on cities with universal design (built with accessibility for all persons with disabilities), e-participation in governance by persons previously unable to self-advocate for their rights, research that educates policymakers on the special needs of persons with disabilities, and the general promotion of human rights regardless of ability for all persons.  Here, the political spectacle was negligible.  These are real persons—with and without physically evident disabilities–working in all corners of the world to ensure “no one is left behind”.  Any jadedness from the political spectacle of the official meeting of State Parties dissipates by the passion and ingenuity of all actors displaying their unique methods to ensure universal human rights for persons with disabilities.  The breakout sessions were visionary and motivating, empowering and inspirational.  The real action is located here, not in the lofty UN assembly meet rooms.  The full expression of human rights finds protection and promotion by humans, not by institutions.

a picture of the rapporteur sign on the UN floor
Source: Nicholas Sherwood

Moving forward, as a human rights student and peace advocate, I am still very much interested in a career with the UN.  This experience though, assisting in conference presentations and serving as Court Rapporteur for official State Party meetings, left a few indelible impressions on me and changed by outlook and understanding of the UN.  Prior to this UN trip, I placed absolute faith the UN system and its machinations.  I believed the Conventions (on disabilities, women, children, etc.) enforced human rights.  I believed the UN was a human rights ‘police force’ of sorts.  I believed international governance was a smooth process and was fruitful in protecting human rights and promoting peace.

Now I understand people, not documents, protect human rights.  International governance works when purveyor of rights–people–are vigilant and unrelenting in the protection of their dignity.  For those who may not have the opportunity to self-advocate, such as persons with disabilities, we must not put words in their mouths or patronizingly speak for them.  They can speak for themselves. We, the able-bodied population, must offer our louder megaphones to them to ensure their voices find expression.  The UN works when we, the global community, work with institutions of all levels–local, regional, national, and international–to ensure “no one is left behind” in the pursuit of a world enshrining human dignity and respect.  The UN is indeed an ideal but people have the real power.  Realistic idealism, in this regard, may be the optimal method to promote and protect human rights.  We, the people, owe it to all members of society to remain vigilant, purposeful, and passionate in our advocacy. The tireless self-advocacy of persons with disabilities at the 10th anniversary of the CRPD is a poignant reminder that apathy and indifference has no home in even the most marginalized populations.  As a student of human rights and a global citizen at large, this experience changed me for the better.

“Sesame Street” and Autism: An initiative about Inclusion

Sesame Street. Source: Gavin St. Our, Creative Commons.

Sesame Street introduced viewers to the newest “live” Muppet on the block, earlier this month. Her name is Julia and she is on the autism spectrum. Initially introduced in 2015 as part of Sesame Street and Autism: See Amazing in All Children Initiative, Julia’s interaction with the other residents on Sesame Street teach them how to befriend and include individuals who are different, without being afraid. Autism Spectrum Disorder (ASD) is a developmental disability that can cause substantial social, behavioral and communication challenges. Individuals with ASD communicate, interact, and learn in ways that are different to people without ASD. Dr. Stephen Shore believes that “If you’ve met one person with autism, you’ve met one person with autism.” Every individual diagnosed with ASD has diverse functioning abilities and level of autistic symptoms, making each individual case distinctive. Currently, 1 in 68 children worldwide are diagnosed with ASD. ASD crosses every social and economic sphere. The goal of the Sesame Street and Autism Initiative is to remove the stigma of autism. Julia optimistically reminds viewers that individuals with disabilities have the talent and ability to positively contribute to our society while making the world a more unique and interesting place.

Over the past two decades, the human rights perspective on disability has shifted from viewing people with disabilities as problems towards recognizing them as holders of rights. A universal victory for people and families with disabilities came with the ratification and adoption of the Convention on the Rights of People with Disabilities (CRPD) by the United Nations in 2008. For children who Julia represents, the CRPD guarentees that those children can go grow up and have the same opportunities to achieve their goals just like children without disabilities. The United States has not ratified the CRPD, although there are continuous adjustments to domestic policies, ensuring the protection of the civil and human rights of persons with disabilities. There are currently numerous federal civil rights laws that safeguard people with disabilities so equal opportunities in employment, education, voting without discrimination are made available. The Century Communications and Video Accessibility Act (CVAA) became law under the Obama administration on October 8, 2010. This law increases the access of persons with disabilities to modern communications, and is up to date with 21st century technologies. Technology can revolutionize how people with disabilities interact and live in a society intended for those with no developmental or functional disability. The ratification of CRPD and continued promotion of the general welfare of all citizens should remain the focus of future government administrations.

People with disabilities have been marginalized and excluded from society within all cultures. National and international laws and conventions do not protect from discrimination on an individual level, with common responses of pity or disgust, which reinforced disabled peoples segregation in society. The lack of understanding regarding ASD and other disabilities can make life more stressful and challenging for individuals with developmental differences. The societal treatment towards people with disabilities lead to the phenomenon of invisibility. The phenomenon of invisibility rationalizes that society has the “tendency to construct everyday life with only the able-bodied in mind and the greater the lack of a physical presence of disabled persons in the mainstream, the more “natural” this assumption appeared to be (OHCHR).” As of March 2017, the Office of Disability Employment Policy (ODEP) disclosed that only 20.4% of people with disabilities are employed compared to 68.7% employed individuals without disabilities. Likewise, the unemployment rate for people with disabilities is 10.6% compared to 4.3% for people without disabilities. Furthermore, in 2015, Cornell University approximates 20.1% of non-institutionalized individuals with a disability aged 21 to 64 years in the United States have less than a high school education. The invisibility of people with disabilities has a drastic effect on their enjoyment of civil and human rights because they have been excluded and isolated.

a picture of a child smiling a big grin
Smile for the camera. Source: Arielle Calderon, Creative Commons.

The stigmatization of people with disabilities will persist until society embraces disabilities as adaptable differences, rather than with negative connotations. For example, a study analyzing parental perspectives on the diagnosis of ADS found that parents of non-diagnosed children described the potential diagnosis as scary, dangerous and frightening. The study also found that parents with diagnosed children sometimes go through denial, and try to find other reasons for their child’s behavior because they are reluctant to label their child as having a disability. However after the denial stage, parents elaborated on how they are started to reconstruct their beliefs about ASD, and began to project ASD from a positive perspective. This is why initiatives like “Sesame Street and Autism” are so important; not only do they educate children and adults about ASD, but also normalizes and cultivates respect for people with disabilities such as ASD. In order to communicate, Julia expresses herself in different ways that other characters on Sesame Street, who are not on the ASD. She flaps her arms when she is very bothered or happy, avoids direct eye contact, and repeats words. Even though Julia’s behaviors are different, Elmo, Big Bird and the other characters have learned to adapt, accept through understanding, and intentionally include her in their play dates.

Autism made nation headlines was during the vaccination causing autism controversy, which misinformed millions, and portrayed a diagnosis and prognosis as a hindering, negative characteristic. Julia’s addition to Sesame Street has generated significant discussion about about autism specifically, and disabilities, generally, and the societal stigma surrounding them. Recently appearances on popular network shows such as the “The View” and “60 Minutes” allowed for explanation and clarification as to why “Sesame Street” felt it was finally time to introduce a character like Julia into the show. Stacy Gordon, the women who plays the voice of Julia, very much understands the hardships of autism and inclusion. Stacy’s son is on the autism spectrum. In an interview with 60 Minutes, she admits that her sons classmates did not understand how to react to his breakdowns and social differences. She truly believes that exposing parents and children to Julia is going to help progress our society into a more disability friendly world. Sesame Street‘s leadership and dedication to teaching children love and acceptance continues to pave the way for a brighter and inclusive future. This initiative constructs a conversation about disabilities and autism while it reinforces the positive narrative about differences and inclusion.

UAB IHR at UN for Soft-launch of CRPD 10+ App

https://www.un.org/development/desa/disabilities/wp-content/uploads/sites/15/2016/08/IDPD-Logo-rev.4-300.jpg
Source: UN Division of Social Policy and Development Disability.

 

The UAB Institute for Human Rights is co-sponsoring the soft-launch of the “CRPD 10+ App” at this year’s United Nations International Day of Persons with Disabilities. The CRPD App is an iOS 10 application commemorating the 10th anniversary of the Convention of the Rights of Persons with Disabilities (CRPD) and serves as a tool for human rights education, advocacy, activism, and empowerment. The app has been developed by the Institute on Disability and Public Policy (IDPP) at American University.

Our Director, Dr. Tina Kempin Reuter, will speak Dec. 2 at 12:15 pm CST at the United Nations headquarters in New York City on the significance of the “CRPD + 10 App”. The event will be live streamed and available for remote participation via the link here.