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.