CRPD – Page 2 – UAB Institute for Human Rights Blog

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 21^st 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 9^th 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.

For a list of our upcoming events, please visit our events page.

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. Photo by Ajanet Rountree.

The United Nations (UN) Conference on State Parties (CoSP10) experience began on the 29^th 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 29^th floor. The perspective is much different up there.

The Division of Economic and Social Affairs (DESA) is located on the 29^th 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.

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

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 10^th 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.

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 10^th 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.